We had such nice expectations for our return home. A combination of advanced ticketing and the use of some hard-earned frequent fliers had us flying home next to each other in sleeper seats on a widebody plane with personal video monitors, free food, etc.
Such was the plan, anyhow.
Mechanical problems delayed our flight from Little Rock to Dallas. After sitting on the tarmac for thirty minutes, they pulled back to the gate to keep fixing the problem, and they had us deplane. I could see trouble brewing so I called American to try to ensure we had reservations on a different flight for the afternoon leg. I was halfway through finishing this when we were told to board again. They went to the trouble of deplaning for 10 minutes -- adding another 20 minutes to our delay getting on and off the plane. We got there with twenty minutes before our other flight took off.
I ran as fast as I could -- which is not fast since I'm in the worst physical condition of my life -- and got to the gate. The door was closed, but the plane was still there. If I had a nickel for every time I have been on a plane where they have announced that they are waiting just a moment for a few passengers connecting from another flight, I'd be a wealthy man. But I have no nickels. Nor did the passengers on the nice widebody plane from Dallas to LA receive any nickels today, since they wrote off the seven or so people connecting to that flight, ourselves included.
By now, of course, first class was sold out all day. And in fact the only seats they had were on a redesigned 737, narrow body jet with VERY narrow seats that do not recline. Jill and I were seated in middle seats in separate rows. My shoulder was killing me, both from the exertion and from the extremely uncomfortable position I was forced into by the small seat.
So much for the triumphant return home.
I have been on Oxycontin for the pain, and the nausea is setting in, so I'm going to have to take something for it. Hopefully the pain will subside by tomorrow.
I'm going to give American a piece of my mind...they had better refund the difference in ticket price and also refund any change fees that they had previously assessed. And they had better refund the difference between 21-day advance purchase coach versus what we had.
I'm very, very ticked off about this.
So much for not sweating the small stuff or hoping to keep my blood pressure under control!
I am completely exhausted and I don't feel well (nausea) so I'm going to go to bed very, very early.
At least, though, we are home!
Friday, July 31, 2009
Thursday, July 30, 2009
Positive comments in my discharge appointment with BB!
First, they placed the portacath on my chest near my left shoulder in surgery this morning. All I can say is....OUCH THIS HURTS!!! It reminds me of my hernia surgery. If I move my left arm more than an inch it's like a knife being twisted there. I am on Tylenol right now but may need to switch it up to something stronger. This will only last a couple of days but it is not very comfortable in the least. I really hope this was worth it. BB said at dinner last night that he would recommend it, so I guess it will be okay. Hopefully it won't interfere with my (bad) golf swing.
They removed the CVL from the right side of my chest after the procedure was done. I have to admit...it was completely painless. So those of you following the blog that have one of these in you, it is a total non-event. I have grown to not necessarily trust the clinic when they suggest that something "isn't bad at all." However in this case, they are correct. Took about twenty seconds for them to remove the two stitches and pull the thing out and I barely felt anything at all.
After I got out of surgery, we had lunch and then went back for my discharge appointment with BB.
First, turns out I'm not really getting out of here for as long as I thought. Maintenance doesn't begin right away. There is a break of 4-6 weeks, after which I return here for 2-3 days of restaging tests. ANOTHER bone marrow. And **TWO** needle aspirations of lesions. I'm not crazy about doing any of these but I want to make sure we know exactly what is going on with my disease so I will submit to them, provided I am unconscious for it which they have finally started to realize is going to be a mandatory requirement of mine that they shouldn't bother objecting to.
In many cases, bridging therapy (Thalidomide and Dex) is prescribed during this 4-6 week break. Fortunately, in my case, it was not. I really don't ever want to take Thalidomide again. I have very fortunately made it through this whole thing with virtually no neuropathy at all, which I attribute to the combination of MetaNex (the vitamin B complex), Alpha Lipoic Acid supplements, and good fortune.
Now...to the cancer itself. We did not get updated M-spike data today. However I did learn that I was correct in my interpretation of those charts. The big spike on the left is Albumin. The other things on the right are the various types of protein "regions" -- alpha 1, alpha 2, etc. The last group on the right, where the evil protein spike rears its ugly pointed head, is the gamma region.
In a blog a few weeks ago, I may have noted that I have IgG Lamba, low-risk Myeloma, but that I am in a nasty subtype called "proliferation subtype" which confers a less favorable prognosis. I am also in a subtype called "hyperdiploid" which confers a more favorable prognosis. They don't quite balance out -- the proliferation subtype ain't great.
BB showed me more statistics. The five year survival rate for the proliferation subtype in low-risk disease overall is around 80%. However the five year event free survival rate for proliferation subtype in low-risk disease is 100% once CR is achieved. Once again: I MUST ACHIEVE CR. BB clarified this apparent discrepancy in his dictation, which was hilarious. It went something like this.
"While this conundrum appears difficult to reconcile to patient and wife (he winked at us at this point), it is, in fact, simple to explain. Once complete remission is achieved, the lower survival rate of the proliferation subtype is no longer a valid measure and five year event free survival is essentially 100%."
There's a lot in this sentence. First, BB is pretty damn funny. Second, though, consider again how amazing that 100% EFS statistic it. Recall that per the American Cancer Society, five year survival from diagnosis is 34%. THIRTY FOUR PERCENT. Versus ONE HUNDRED PERCENT for low-risk patients (85% of total) that can achieve complete remission (about 80% of those). BB's overall five year survival, including both low and high risk patients, is around 60%. Basically DOUBLE the overall average. And if you consider that the 34% includes those patients that were involved in BB's protocol, the non-protocol patients must be less than 30%.
I am, once again, so very glad I chose this aggressive way to treat the disease.
Now...to the topic of complete remission. I appear to be getting pretty close.
My bone marrow is formally characterized as in complete remission. Hurray!
In the blood, the M-protein is still present. However, under immunofixation, while the M protein is still there, there are also "indistinct kappa bands present." At first I was scared of what this could mean, but it is actually a very positive thing. It means, evidently, that my marrow has resumed normal function. According to BB's dictation -- which I tried to record unsuccessfully due to operator error on my iPhone -- this means the following:
"While immunofixation reveals the uniclonal protein is still present and this would typically confer a very good partial response, in the setting of kappa bands this confers a more profound remission."
I am not quite in CR...but I am getting quite close.
And so, while I thought I would get out of here for three months, I find myself planning a return visit for 3-4 days sometime in September, where more painful tests will be done. In the meantime, I will do weekly blood tests and hopefully watch this M-spike vanish once and for all.
And, of course, I shall keep you all posted.
They removed the CVL from the right side of my chest after the procedure was done. I have to admit...it was completely painless. So those of you following the blog that have one of these in you, it is a total non-event. I have grown to not necessarily trust the clinic when they suggest that something "isn't bad at all." However in this case, they are correct. Took about twenty seconds for them to remove the two stitches and pull the thing out and I barely felt anything at all.
After I got out of surgery, we had lunch and then went back for my discharge appointment with BB.
First, turns out I'm not really getting out of here for as long as I thought. Maintenance doesn't begin right away. There is a break of 4-6 weeks, after which I return here for 2-3 days of restaging tests. ANOTHER bone marrow. And **TWO** needle aspirations of lesions. I'm not crazy about doing any of these but I want to make sure we know exactly what is going on with my disease so I will submit to them, provided I am unconscious for it which they have finally started to realize is going to be a mandatory requirement of mine that they shouldn't bother objecting to.
In many cases, bridging therapy (Thalidomide and Dex) is prescribed during this 4-6 week break. Fortunately, in my case, it was not. I really don't ever want to take Thalidomide again. I have very fortunately made it through this whole thing with virtually no neuropathy at all, which I attribute to the combination of MetaNex (the vitamin B complex), Alpha Lipoic Acid supplements, and good fortune.
Now...to the cancer itself. We did not get updated M-spike data today. However I did learn that I was correct in my interpretation of those charts. The big spike on the left is Albumin. The other things on the right are the various types of protein "regions" -- alpha 1, alpha 2, etc. The last group on the right, where the evil protein spike rears its ugly pointed head, is the gamma region.
In a blog a few weeks ago, I may have noted that I have IgG Lamba, low-risk Myeloma, but that I am in a nasty subtype called "proliferation subtype" which confers a less favorable prognosis. I am also in a subtype called "hyperdiploid" which confers a more favorable prognosis. They don't quite balance out -- the proliferation subtype ain't great.
BB showed me more statistics. The five year survival rate for the proliferation subtype in low-risk disease overall is around 80%. However the five year event free survival rate for proliferation subtype in low-risk disease is 100% once CR is achieved. Once again: I MUST ACHIEVE CR. BB clarified this apparent discrepancy in his dictation, which was hilarious. It went something like this.
"While this conundrum appears difficult to reconcile to patient and wife (he winked at us at this point), it is, in fact, simple to explain. Once complete remission is achieved, the lower survival rate of the proliferation subtype is no longer a valid measure and five year event free survival is essentially 100%."
There's a lot in this sentence. First, BB is pretty damn funny. Second, though, consider again how amazing that 100% EFS statistic it. Recall that per the American Cancer Society, five year survival from diagnosis is 34%. THIRTY FOUR PERCENT. Versus ONE HUNDRED PERCENT for low-risk patients (85% of total) that can achieve complete remission (about 80% of those). BB's overall five year survival, including both low and high risk patients, is around 60%. Basically DOUBLE the overall average. And if you consider that the 34% includes those patients that were involved in BB's protocol, the non-protocol patients must be less than 30%.
I am, once again, so very glad I chose this aggressive way to treat the disease.
Now...to the topic of complete remission. I appear to be getting pretty close.
My bone marrow is formally characterized as in complete remission. Hurray!
In the blood, the M-protein is still present. However, under immunofixation, while the M protein is still there, there are also "indistinct kappa bands present." At first I was scared of what this could mean, but it is actually a very positive thing. It means, evidently, that my marrow has resumed normal function. According to BB's dictation -- which I tried to record unsuccessfully due to operator error on my iPhone -- this means the following:
"While immunofixation reveals the uniclonal protein is still present and this would typically confer a very good partial response, in the setting of kappa bands this confers a more profound remission."
I am not quite in CR...but I am getting quite close.
And so, while I thought I would get out of here for three months, I find myself planning a return visit for 3-4 days sometime in September, where more painful tests will be done. In the meantime, I will do weekly blood tests and hopefully watch this M-spike vanish once and for all.
And, of course, I shall keep you all posted.
Wednesday, July 29, 2009
Hello left hand? Meet the right hand. You guys should talk more often!!!
So there was no surgery this morning.
I got up painfully early and went in to make sure my platelets were still in good shape. While there, I told them go ahead and run one last set of labs. Why not! Blood for everybody, on the house! :)
I left the infusion center and went over to the outpatient surgery center on the 4th floor of the hospital where I've had all the bone marrows done before. They couldn't find us in their ledger, and referred us to a different surgery clinic around the corner where kidney transplants are done. Hmm.
Anyhow, this was the right place. They had me on the ledger there. We waited, and I was called, and went back.
That's when the RN said "just so you know, you're not having surgery today."
Turns out I was just there to meet with the doctor. This was mildly irritating (to say the least) since we have carefully scheduled our remaining few days here. I went to the trouble of having a platelet infusion that wasn't necessary, for one thing! My blood pressure, which was 117 over 82 in the clinic, suddenly was 140 over 90. Grrrrr!!!!
We then met with the doctor, a fairly young guy who was nice enough. Except he started off by telling me how much higher the risk of infection was with Myeloma patients, and then went through the list of all the things that could go wrong with a portacath. Do I want to hear that carrying a golf bag could give me a pulmonary embolism? No, I do not.
It was a pretty depressing conversation, to tell you the truth. They have to place this thing deep under the skin and cut through muscle, etc. It's closer to a hernia operation than a line placement, actually. I left pretty ambivalent about whether or not to do it after all. I figured it might be easier to do nothing, just have the one line removed, and then maybe in a few weeks try maintenance and see how bad it is trying to let them just do the IVs.
As I was ruminating on this, Kristen, the APN from the infusion center, called. My CRP has come down, which is good. My uric acid is coming down thanks to the Allopurinol tablets that I was prescribed. Also good. My platelets were 81 post infusion yesterday and 84 this morning, so they held and increased a bit. I am sure I will be over 75 tomorrow, so that should be fine.
The M-spike, despite the smaller hump size in the graphs I posted last night, remains at trace levels. I'm not concerned.
Kristen did say that she has never encountered anybody with a portacath who regretted having it placed. That helped out a bit. I'm going to have dinner with BB and BJ again (BB's wife is out of town or she would be joining us) as a farewell meal, and I'll see what he thinks about the likelihood of complications and whether or not I should have this done here versus just having the line pulled and then dealing with the portacath at some point in the future.
As it stand now, I have surgery tomorrow morning at 9AM, and then a discharge appointment with BB at 3PM. I will go into the infusion center at 7AM -- might as well get one more lab out of me for kicks, plus they will run cancer markers on it and it's the last chance to see the M-spike before we leave town.
I'll post an update.
I had a long conversation today with a gentleman from Los Angeles whose wife, age 61, has been through Myeloma hell for about a year. She began treatment under Dr. JB -- the guy who doesn't do any transplants -- in LA and it didn't work out. She got very ill, and then was looking into Dr. SF at City of Hope but had to be hospitalized. She managed to recover against all odds, and part of the protocol was a single transplant by Dr. RV, another one of the folks that I was going to consult with back in Los Angeles long ago. The single transplant didn't take either, so this couple finds themselves here. Her husband actually just took out a lease on the condo unit on the floor directly beneath us.
At any rate, I had a great conversation with this gentleman -- he and his wife have the exact right attitude to bring to this fight. It feels good to be helping others -- as I said, I am fortunate that I have fared as well as I have, such that I can start turning some of my attention from managing my own disease to helping others manage theirs.
The apartment has been cleaned out...our car is loaded onto a truck and being sent back to California...and we fly back in Friday. As I said goodbye to the friends we have made among the care providers and fellow patients, I can't help but think back to high school graduation -- it's that same type of feeling. Except, frankly, high school was worse in some ways than cancer. :)
More news tomorrow, I am sure. And I should sleep well tonight as I'm dead on my feet. :)
I got up painfully early and went in to make sure my platelets were still in good shape. While there, I told them go ahead and run one last set of labs. Why not! Blood for everybody, on the house! :)
I left the infusion center and went over to the outpatient surgery center on the 4th floor of the hospital where I've had all the bone marrows done before. They couldn't find us in their ledger, and referred us to a different surgery clinic around the corner where kidney transplants are done. Hmm.
Anyhow, this was the right place. They had me on the ledger there. We waited, and I was called, and went back.
That's when the RN said "just so you know, you're not having surgery today."
Turns out I was just there to meet with the doctor. This was mildly irritating (to say the least) since we have carefully scheduled our remaining few days here. I went to the trouble of having a platelet infusion that wasn't necessary, for one thing! My blood pressure, which was 117 over 82 in the clinic, suddenly was 140 over 90. Grrrrr!!!!
We then met with the doctor, a fairly young guy who was nice enough. Except he started off by telling me how much higher the risk of infection was with Myeloma patients, and then went through the list of all the things that could go wrong with a portacath. Do I want to hear that carrying a golf bag could give me a pulmonary embolism? No, I do not.
It was a pretty depressing conversation, to tell you the truth. They have to place this thing deep under the skin and cut through muscle, etc. It's closer to a hernia operation than a line placement, actually. I left pretty ambivalent about whether or not to do it after all. I figured it might be easier to do nothing, just have the one line removed, and then maybe in a few weeks try maintenance and see how bad it is trying to let them just do the IVs.
As I was ruminating on this, Kristen, the APN from the infusion center, called. My CRP has come down, which is good. My uric acid is coming down thanks to the Allopurinol tablets that I was prescribed. Also good. My platelets were 81 post infusion yesterday and 84 this morning, so they held and increased a bit. I am sure I will be over 75 tomorrow, so that should be fine.
The M-spike, despite the smaller hump size in the graphs I posted last night, remains at trace levels. I'm not concerned.
Kristen did say that she has never encountered anybody with a portacath who regretted having it placed. That helped out a bit. I'm going to have dinner with BB and BJ again (BB's wife is out of town or she would be joining us) as a farewell meal, and I'll see what he thinks about the likelihood of complications and whether or not I should have this done here versus just having the line pulled and then dealing with the portacath at some point in the future.
As it stand now, I have surgery tomorrow morning at 9AM, and then a discharge appointment with BB at 3PM. I will go into the infusion center at 7AM -- might as well get one more lab out of me for kicks, plus they will run cancer markers on it and it's the last chance to see the M-spike before we leave town.
I'll post an update.
I had a long conversation today with a gentleman from Los Angeles whose wife, age 61, has been through Myeloma hell for about a year. She began treatment under Dr. JB -- the guy who doesn't do any transplants -- in LA and it didn't work out. She got very ill, and then was looking into Dr. SF at City of Hope but had to be hospitalized. She managed to recover against all odds, and part of the protocol was a single transplant by Dr. RV, another one of the folks that I was going to consult with back in Los Angeles long ago. The single transplant didn't take either, so this couple finds themselves here. Her husband actually just took out a lease on the condo unit on the floor directly beneath us.
At any rate, I had a great conversation with this gentleman -- he and his wife have the exact right attitude to bring to this fight. It feels good to be helping others -- as I said, I am fortunate that I have fared as well as I have, such that I can start turning some of my attention from managing my own disease to helping others manage theirs.
The apartment has been cleaned out...our car is loaded onto a truck and being sent back to California...and we fly back in Friday. As I said goodbye to the friends we have made among the care providers and fellow patients, I can't help but think back to high school graduation -- it's that same type of feeling. Except, frankly, high school was worse in some ways than cancer. :)
More news tomorrow, I am sure. And I should sleep well tonight as I'm dead on my feet. :)
The future of this blog...
Just a very quick note. The end of my primary therapy does not mean the end of this blog. Far from it.
After the end of this week, I will probably post with less frequency. There won't be daily labs, for one thing. My primary therapy is over and my side effects will hopefully dwindle away. And you are probably all getting sick of me anyway. :)
However, I won't be abandoning this blog! I will be posting ongoing updates as I progress through maintenance therapy, my future testing, my visits back to see BB, etc. Perhaps updates will be bi-weekly or weekly rather than multiple times a week, but they weill be there! Meanwhile I have been asked by three separate cancer websites to be a contributor and I am working through the details of that. I'll post some material on those sites and they will direct back here for more information. More importantly, I have some ideas about how to make this blog more readily available to people with a new Myeloma diagnosis.
I want to thank, again, each and every one of you that reads this. I have been very fortunate to have been contacted by many of you, and many others who don't comment here, and I know that by telling my story, people have found information about their disease, perspectives on treatments, insight on side effects, and one or two laughs along the way. I'm not solving world hunger here but in a very small way I think I have been able to help some people with this disease, and it is tremendously gratifying to do so. I am blessed and very thankful for the opportunity to do so.
Okay. Ninety minutes to go before I was supposed to get up this morning in preparation for my surgery. I think I'll try to get a little more sleep before the alarm. Nighty night!
After the end of this week, I will probably post with less frequency. There won't be daily labs, for one thing. My primary therapy is over and my side effects will hopefully dwindle away. And you are probably all getting sick of me anyway. :)
However, I won't be abandoning this blog! I will be posting ongoing updates as I progress through maintenance therapy, my future testing, my visits back to see BB, etc. Perhaps updates will be bi-weekly or weekly rather than multiple times a week, but they weill be there! Meanwhile I have been asked by three separate cancer websites to be a contributor and I am working through the details of that. I'll post some material on those sites and they will direct back here for more information. More importantly, I have some ideas about how to make this blog more readily available to people with a new Myeloma diagnosis.
I want to thank, again, each and every one of you that reads this. I have been very fortunate to have been contacted by many of you, and many others who don't comment here, and I know that by telling my story, people have found information about their disease, perspectives on treatments, insight on side effects, and one or two laughs along the way. I'm not solving world hunger here but in a very small way I think I have been able to help some people with this disease, and it is tremendously gratifying to do so. I am blessed and very thankful for the opportunity to do so.
Okay. Ninety minutes to go before I was supposed to get up this morning in preparation for my surgery. I think I'll try to get a little more sleep before the alarm. Nighty night!
Confirmation on the reimmunization issue
In addition to BB saying no reimmunization was necessary, I spoke with SF at City of Hope to get a second opinion on it. At the prestigious multi-cancer center Southwest Oncology Group, BB is the Myeloma czar and SF is the transplant czar. SF oversees transplant protocols for serveral types of cancer, not just Myeloma. He told me he does not reimmunize after an autologous transplant. There are tests he will occasionally run to check levels of antibodies in the blood, and in rare cases he might intervene, but these are definitely the exception and not the rule.
He did mention that part of what is relied upon is "herd" immunity -- that is, the people around us are immunized against this so the likelihood of contracting the disease is, in his words, "very, very, very low." I advised that in my herd at home I have a calf about to turn two and he will be getting various immunizations. These are, I am told, not a problem. The only live virus used is for the polio vaccine which is administered orally and excreted in the stool, so as long as I stay away from dirty diapers (HURRAY! A MEDICAL EXCUSE!!!) I should be fine.
The one issue that does keep coming back is Chicken Pox. I now recall that Acyclovir, the antiviral that I have been on almost constantly since beginning therapy, is designed to keep this at bay. I will probably be on this for a very long time, which is probably just fine. But I will ask BB about this, as well as about international travel that could be required for work -- or even meeting with people from other countries. If I have a meeting with a room full of people from a country that requires special immunization, do I need to be concerned?
I want to also thank my beloved blog followers for letting me know of a couple of reimmunzation stories, including one posted here in the comments that speaks (at least anecdotally if not with statistical backup) of the cancer coming back after the immune system surges in response to the vaccinations. NO THANKS!!!!!
He did mention that part of what is relied upon is "herd" immunity -- that is, the people around us are immunized against this so the likelihood of contracting the disease is, in his words, "very, very, very low." I advised that in my herd at home I have a calf about to turn two and he will be getting various immunizations. These are, I am told, not a problem. The only live virus used is for the polio vaccine which is administered orally and excreted in the stool, so as long as I stay away from dirty diapers (HURRAY! A MEDICAL EXCUSE!!!) I should be fine.
The one issue that does keep coming back is Chicken Pox. I now recall that Acyclovir, the antiviral that I have been on almost constantly since beginning therapy, is designed to keep this at bay. I will probably be on this for a very long time, which is probably just fine. But I will ask BB about this, as well as about international travel that could be required for work -- or even meeting with people from other countries. If I have a meeting with a room full of people from a country that requires special immunization, do I need to be concerned?
I want to also thank my beloved blog followers for letting me know of a couple of reimmunzation stories, including one posted here in the comments that speaks (at least anecdotally if not with statistical backup) of the cancer coming back after the immune system surges in response to the vaccinations. NO THANKS!!!!!
Pictures of M-spikes and matchstick men...and some random thoughts on a few other things...
Another fairly sleepless night. I attribute this to (1) excitement over my final surgical procedure this AM, removing my central line and replacing it with a portacath, (2) excitement over my primary treatment coming to a close, and (3) excitement over declining M-spike and approaching complete remission.
Labs yesterday were good. White count up to the mid 5s, so my immune system is back in place. Hemoglobin inching up. Platelet recovery, now that it is no longer inhibited by the growth factor, is happening as well -- they went from 26 to 50 overnight. They need to be 75 this AM in order to proceed with the procedure, so I received an infusion of platelets yesterday late afternoon just to be safe.
I will go in at 7AM this morning for what should be my final trip to the infusion center other than the seven followup visits I will have over the coming three years. I'm going to try to take a bunch of pictures today to give some life to the stories I've been telling on this blog over the past six months. Then at 8AM I will go to the outpatient center to have the line removel and portacath placement done under conscious sedation. One more victory -- it took a little less complaining this time, too!
We have become accustomed to basically daily monitoring of virtually every aspect of my blood. It will take some adjustment to not having the comfort of seeing that data with frequency. I am sure that during maintenance I will be getting information a couple of times a month, but this seems like an extraordinary delay in between readings. We shall have to get used to it. It will be easier to do so if I am in complete remission and we don't anticipate anything coming back.
Which brings me to another reason for my inability to sleep. We got the labs back from Monday, and the M-spike data hasn't been interpreted yet. But they do have a visual of all the protein in my blood passed through electrophoresis, which means a current is run through the blood and that current causes the different proteins to separate for quantification.
Here's what one of these looks like, from way back on February 27th. The X-axis (going from left to right across the bottom) are all the different types of proteins in my blood. The Y-axis (going from bottom to top on the left hand side) is the volume (how much) of that type of protein is present.
You will note a couple of things here. There is a large spike on the left. This spike is normal and everybody has it in their blood. I'm not sure exactly what it is (I suspect it is Albumin), but it's not the problem. Nor are the little bumps near the bottom. The problem is the GIANT spike on the right. This is the evil M-spike, in all its full-raging cancerous glory. This is the visual representation of all the little monoclonal proteins -- ones that serve no purpose on the blood since they are defective -- produced by cancerous plasma cells. The reading here is 5.5 g/dl of blood -- that is, the M-spike is 5.5
Now, here's what the graph looked like as of July 16th, about 10 days ago, when we first got the reading of "trace" levels. You will note, the spike on the right has declined tremendously.
The other proteins in the blood fluctuate but don't change too wildly. You can compare the size of the spike on the right to the other spike on the left -- the normal spike -- to see how much it has changed in five months of therapy. The bad protein spike has gone from more than twice the size of the normal spike to about 1/7th the size of it.
Here's where things get tantalizingly interesting and what is keeping me up tonight with anticipation. We're still waiting on the actual numbers...you can see in both the photo below and the first one above that some of the results are noted as "in lab" on the sheet, whereas the actual results are shown in the second photo of the series (TR, meaning trace, with the explanation below). The chart below is from the analysis of my blood on July 27th.
Now I dunno if this is zero, or trace still, but the size of that hump is less than the size of it just 10 days ago. So regardless of what the quantitative reading is when it comes back, it's moving down! This despite the fact that my active therapy ended several days before the draw. So that's excellent.
I was told by SF that he would be shocked if my maintenance therapy didn't wipe out what little was left pretty soon. I had joked with BB that whatever cancer cells were left were like the two Japanese soldiers left on a tiny island who never received word that WW2 was over. Sooner or later they will get with the program. Strictly speaking, that begins the 72-month count. Recall that per BB's data, six years of sustained complete remission equals a cure. Few low risk patients (less than 20%) lose CR once it is achieved.
Okay, now that I've gotten a few more pictures from my iPhone to this blog, I did move two more over for comic effect.
First, a celebrity sighting...of sorts. :) Any of you see The Curious Case of Benjamin Button, based on the F. Scott Fitzgerald short story about the man born elderly who grows younger as he ages? Here's a well-known stlll from the film.
Yesterday, at the sushi restaurant we like here, I'm pretty sure we saw this guy.
Okay...okay!!! (your humble narrator is now ducking tomatoes and boos and hisses). Sorry! But c'mon it IS pretty funny, right? :)
I will leave you with the type of dessert menu only found in this part of the country. Please note that a "Moonpie" was the primary source of food for the hero in the videogame "Redneck Rampage."
We passed on everything -- particularly the Moonpie and the Bacon Ice Cream. Barf.
Labs yesterday were good. White count up to the mid 5s, so my immune system is back in place. Hemoglobin inching up. Platelet recovery, now that it is no longer inhibited by the growth factor, is happening as well -- they went from 26 to 50 overnight. They need to be 75 this AM in order to proceed with the procedure, so I received an infusion of platelets yesterday late afternoon just to be safe.
I will go in at 7AM this morning for what should be my final trip to the infusion center other than the seven followup visits I will have over the coming three years. I'm going to try to take a bunch of pictures today to give some life to the stories I've been telling on this blog over the past six months. Then at 8AM I will go to the outpatient center to have the line removel and portacath placement done under conscious sedation. One more victory -- it took a little less complaining this time, too!
We have become accustomed to basically daily monitoring of virtually every aspect of my blood. It will take some adjustment to not having the comfort of seeing that data with frequency. I am sure that during maintenance I will be getting information a couple of times a month, but this seems like an extraordinary delay in between readings. We shall have to get used to it. It will be easier to do so if I am in complete remission and we don't anticipate anything coming back.
Which brings me to another reason for my inability to sleep. We got the labs back from Monday, and the M-spike data hasn't been interpreted yet. But they do have a visual of all the protein in my blood passed through electrophoresis, which means a current is run through the blood and that current causes the different proteins to separate for quantification.
Here's what one of these looks like, from way back on February 27th. The X-axis (going from left to right across the bottom) are all the different types of proteins in my blood. The Y-axis (going from bottom to top on the left hand side) is the volume (how much) of that type of protein is present.
You will note a couple of things here. There is a large spike on the left. This spike is normal and everybody has it in their blood. I'm not sure exactly what it is (I suspect it is Albumin), but it's not the problem. Nor are the little bumps near the bottom. The problem is the GIANT spike on the right. This is the evil M-spike, in all its full-raging cancerous glory. This is the visual representation of all the little monoclonal proteins -- ones that serve no purpose on the blood since they are defective -- produced by cancerous plasma cells. The reading here is 5.5 g/dl of blood -- that is, the M-spike is 5.5
Now, here's what the graph looked like as of July 16th, about 10 days ago, when we first got the reading of "trace" levels. You will note, the spike on the right has declined tremendously.
The other proteins in the blood fluctuate but don't change too wildly. You can compare the size of the spike on the right to the other spike on the left -- the normal spike -- to see how much it has changed in five months of therapy. The bad protein spike has gone from more than twice the size of the normal spike to about 1/7th the size of it.
Here's where things get tantalizingly interesting and what is keeping me up tonight with anticipation. We're still waiting on the actual numbers...you can see in both the photo below and the first one above that some of the results are noted as "in lab" on the sheet, whereas the actual results are shown in the second photo of the series (TR, meaning trace, with the explanation below). The chart below is from the analysis of my blood on July 27th.
Now I dunno if this is zero, or trace still, but the size of that hump is less than the size of it just 10 days ago. So regardless of what the quantitative reading is when it comes back, it's moving down! This despite the fact that my active therapy ended several days before the draw. So that's excellent.
I was told by SF that he would be shocked if my maintenance therapy didn't wipe out what little was left pretty soon. I had joked with BB that whatever cancer cells were left were like the two Japanese soldiers left on a tiny island who never received word that WW2 was over. Sooner or later they will get with the program. Strictly speaking, that begins the 72-month count. Recall that per BB's data, six years of sustained complete remission equals a cure. Few low risk patients (less than 20%) lose CR once it is achieved.
Okay, now that I've gotten a few more pictures from my iPhone to this blog, I did move two more over for comic effect.
First, a celebrity sighting...of sorts. :) Any of you see The Curious Case of Benjamin Button, based on the F. Scott Fitzgerald short story about the man born elderly who grows younger as he ages? Here's a well-known stlll from the film.
Yesterday, at the sushi restaurant we like here, I'm pretty sure we saw this guy.
Okay...okay!!! (your humble narrator is now ducking tomatoes and boos and hisses). Sorry! But c'mon it IS pretty funny, right? :)
I will leave you with the type of dessert menu only found in this part of the country. Please note that a "Moonpie" was the primary source of food for the hero in the videogame "Redneck Rampage."
We passed on everything -- particularly the Moonpie and the Bacon Ice Cream. Barf.
Tuesday, July 28, 2009
A note on reimmunization
This is a sufficiently important topic as to deserve its own heading -- I didn't want to bury it in the remarks about my meeting with BB.
As I mentioned before, I've come across at least one blog where the MM traveler was beginning reimmunization. There isn't a lot of literature on this subject, although I did come across a couple of somewhat older articles that recommended it. We also have a two year old son who will be getting additional vaccinations over the coming couple of years, some of which might involve a live vaccine.
Per BB, there is no need to be reimmnunized. Simple as that. One of his other doctors, BN, elaborated to a fellow traveler here that there has never been any data that demonstrates reimmunization is necessary.
Generally speaking, if it's good enough for BB, it's good enough for me. However I will ask SF for his opinion on this when I return to LA, hopefully next week.
As I mentioned before, I've come across at least one blog where the MM traveler was beginning reimmunization. There isn't a lot of literature on this subject, although I did come across a couple of somewhat older articles that recommended it. We also have a two year old son who will be getting additional vaccinations over the coming couple of years, some of which might involve a live vaccine.
Per BB, there is no need to be reimmnunized. Simple as that. One of his other doctors, BN, elaborated to a fellow traveler here that there has never been any data that demonstrates reimmunization is necessary.
Generally speaking, if it's good enough for BB, it's good enough for me. However I will ask SF for his opinion on this when I return to LA, hopefully next week.
Neupogen pain and the penultimate BB meeting
We're getting down to the nitty and the gritty of my primary treatment here.
I've been going to the infusion center for my daily labs and growth factor shot. On Sunday, we went in and my white blood count had moved up a bit from .6 to .74. So in two days, from .5, to .6, to .74. Slow progress, but steady and increasing. Platelets, meanwhile, fell from 49 to 24 to 22.
Sunday evening, I started getting that awful bone pain that I experienced after the second transplant while on neupogen. It was not as severe as the previous episode, which really was terrible and nearly sent me to the ER for IV pain management. However it was bad enough that I took some hillbilly heroin (Oxycontin) to take a bit of the edge off. The bones feel like they are being inflated from the inside and are about to burst. It sounds awful...and it is, pretty much. Although this time it was thankfully limited to the long bones in my leg and to a lesser degree my hips.
But I knew all this meant that the neupogen was doing its job. After the second transplant, it went from 1.4 to 8.5 overnight, although the pain was excruciating. The pain this time was only about half as bad, so I didn't expect it to be quite as much of an increase. But I was confident that it was going up.
Which brings me to an important topic: managing one's own care. I sat in the chair and pleasantly but matter-of-factly told the nurse that I wouldn't be accepting a neupogen shot today. It was doing its work, and if my whites were not sufficiently high, they could call me and I would come back and get a shot, but not until we saw the labs. They agreed.
They also wanted to give me a peripheral stick (i.e. draw blood from my arm) to check for a particular virus. They do this by rote every Monday for patients anticipating or going through neutropenia. I told them no thanks. It took them a little longer to give up on this one but I stuck to my guns.
Around this time, I got a call from the scheduler in BB's clinic and she had actually arranged proper conscious sedation (Velcade and Propofol) for the removal of my line and placement of the dual-lumen portacath. Hurray! I don't think I even had to complain to her this time!
So then, we met to meet with BB. It was a resoundingly positive meeting.
* I am "on my way to complete remission." We suspected this to be the case, and I'll be glad when it actually IS the case, but it is nice to be validated. The trace levels of M protein are so low that they cannot be accurately quantified (as I suspected). I asked BB specifically about another course of consolidation and he said no without a moment's hesitation. The Velcade, Revlimix, Dex cocktail I will be on for the next three years would be enough to eradicate whatever is left.
* In response to a specific question from Jill, he said that he did not think I would see the M-spike rise again. If it did, he would take me off maintenance and address it more directly. He said this occurs with some patients (these are mostly the high risk ones, I believe) but thought it would be very unlikely to happen with me.
* He reiterated that my bone marrow is now normal, and we both noted that this was before the consolidation, so if anything the bone marrow is MORE normal than it was before.
* He had the results of the fine needle aspiration of the lesion in my hip. The cells drawn from there showed no abnormalities under flow cytometry (a technique for counting and examining microscopic particles suspended in a stream of fluid) and showed no abnormal karyotypes (meaning I had normal chromosomes in those cells). In other words, in the most actively cancerous area in my body, the cells are now normal.
* The only thing that kept his exuberance in check was that he wanted to see my focal lesions in my bones go away. I told him I wanted the same thing! Recall that this will take months, so as long as there is meaningful progress by my next PET scan, which will probably be in early December, he will be pleased.
* As I anticipated, my white count went up to 3.5, so no neupogen was needed. He was slightly concerned about my CRP, which is now at around 35, until I pointed out to him that CRP had risen in each previous round of treatment as a result of hematopoesis. He seemed good with this and made a note of it in his dictation. My platelets crept up to 26. I will likely need an infusion of platelets prior to commencing my surgery on Wednesday AM as I my blood wont be able to clot if they do it now.
So the schedule for the week:
Tuesday - labs
Wednesday - labs, CVL removal and line placement
Thursday - discharge appointment with BB, movers pick up the car
Friday - fly home!!!
We are very excited, obviously.
As an additional note, we had a wonderful dinner with a fellow MM traveler and his wife last night. It reminded me a bit of the dinner that we had with LB and her husband back in January or February, where LB was kind enough to answer some questions that I had about her treatment here. It is heartening to be on the tail end of primary therapy and be able to help someone who is starting that part of their journey. Jan and Bruce are wonderful people with a very positive attitude and I have no doubt they will find success with the treatment here.
There will be more to come this week. The negative FNA was a definite positive piece of new information, so I feel like today was a bit of a watershed moment -- not quite the monument that CR will be when I hit it, but certainly a great day. Thank all of you for your support, positive thoughts and prayers. They have all contributed to me responding as well as I have.
I've been going to the infusion center for my daily labs and growth factor shot. On Sunday, we went in and my white blood count had moved up a bit from .6 to .74. So in two days, from .5, to .6, to .74. Slow progress, but steady and increasing. Platelets, meanwhile, fell from 49 to 24 to 22.
Sunday evening, I started getting that awful bone pain that I experienced after the second transplant while on neupogen. It was not as severe as the previous episode, which really was terrible and nearly sent me to the ER for IV pain management. However it was bad enough that I took some hillbilly heroin (Oxycontin) to take a bit of the edge off. The bones feel like they are being inflated from the inside and are about to burst. It sounds awful...and it is, pretty much. Although this time it was thankfully limited to the long bones in my leg and to a lesser degree my hips.
But I knew all this meant that the neupogen was doing its job. After the second transplant, it went from 1.4 to 8.5 overnight, although the pain was excruciating. The pain this time was only about half as bad, so I didn't expect it to be quite as much of an increase. But I was confident that it was going up.
Which brings me to an important topic: managing one's own care. I sat in the chair and pleasantly but matter-of-factly told the nurse that I wouldn't be accepting a neupogen shot today. It was doing its work, and if my whites were not sufficiently high, they could call me and I would come back and get a shot, but not until we saw the labs. They agreed.
They also wanted to give me a peripheral stick (i.e. draw blood from my arm) to check for a particular virus. They do this by rote every Monday for patients anticipating or going through neutropenia. I told them no thanks. It took them a little longer to give up on this one but I stuck to my guns.
Around this time, I got a call from the scheduler in BB's clinic and she had actually arranged proper conscious sedation (Velcade and Propofol) for the removal of my line and placement of the dual-lumen portacath. Hurray! I don't think I even had to complain to her this time!
So then, we met to meet with BB. It was a resoundingly positive meeting.
* I am "on my way to complete remission." We suspected this to be the case, and I'll be glad when it actually IS the case, but it is nice to be validated. The trace levels of M protein are so low that they cannot be accurately quantified (as I suspected). I asked BB specifically about another course of consolidation and he said no without a moment's hesitation. The Velcade, Revlimix, Dex cocktail I will be on for the next three years would be enough to eradicate whatever is left.
* In response to a specific question from Jill, he said that he did not think I would see the M-spike rise again. If it did, he would take me off maintenance and address it more directly. He said this occurs with some patients (these are mostly the high risk ones, I believe) but thought it would be very unlikely to happen with me.
* He reiterated that my bone marrow is now normal, and we both noted that this was before the consolidation, so if anything the bone marrow is MORE normal than it was before.
* He had the results of the fine needle aspiration of the lesion in my hip. The cells drawn from there showed no abnormalities under flow cytometry (a technique for counting and examining microscopic particles suspended in a stream of fluid) and showed no abnormal karyotypes (meaning I had normal chromosomes in those cells). In other words, in the most actively cancerous area in my body, the cells are now normal.
* The only thing that kept his exuberance in check was that he wanted to see my focal lesions in my bones go away. I told him I wanted the same thing! Recall that this will take months, so as long as there is meaningful progress by my next PET scan, which will probably be in early December, he will be pleased.
* As I anticipated, my white count went up to 3.5, so no neupogen was needed. He was slightly concerned about my CRP, which is now at around 35, until I pointed out to him that CRP had risen in each previous round of treatment as a result of hematopoesis. He seemed good with this and made a note of it in his dictation. My platelets crept up to 26. I will likely need an infusion of platelets prior to commencing my surgery on Wednesday AM as I my blood wont be able to clot if they do it now.
So the schedule for the week:
Tuesday - labs
Wednesday - labs, CVL removal and line placement
Thursday - discharge appointment with BB, movers pick up the car
Friday - fly home!!!
We are very excited, obviously.
As an additional note, we had a wonderful dinner with a fellow MM traveler and his wife last night. It reminded me a bit of the dinner that we had with LB and her husband back in January or February, where LB was kind enough to answer some questions that I had about her treatment here. It is heartening to be on the tail end of primary therapy and be able to help someone who is starting that part of their journey. Jan and Bruce are wonderful people with a very positive attitude and I have no doubt they will find success with the treatment here.
There will be more to come this week. The negative FNA was a definite positive piece of new information, so I feel like today was a bit of a watershed moment -- not quite the monument that CR will be when I hit it, but certainly a great day. Thank all of you for your support, positive thoughts and prayers. They have all contributed to me responding as well as I have.
Saturday, July 25, 2009
Vivid dreams and nightmares...
One of the things I noticed at several points during my treatment was my propensity for increased frequency and vividness of dreams. I generally wouldn't say I have frequent memorable dreams, and of those the majority aren't nightmares. However during both induction and consolidation, I have frequently had multiple dreams per evening, and many of them were slightly disturbing, actually. This might be of interest to those going through the treatment -- it was a noticeable change for me. It's temporary -- it probably goes away as soon as the chemo has worked its way through one's system. Or perhaps only a few people experience it. Or maybe I'm the only one.
The vivid dreams stopped for me about three days ago. The final three dreams I had weren't nightmares but they also weren't free of disturbing elements. In the first one, I was involved in a car chase for some reason and the car I was driving (which corresponded to my real-life car) was demolished. I made it out alive, though, and the silver lining was that the car was going to be completely replaced by my insurance company. Since my real-life car needs to have all four expensive tires replaced, I viewed this is as good outcome.
The second dream was even more peculiar. Brad Pitt (whom I don't know), some unknown dreamworld "friend of mine" (not a friend in real life) who looked a bit like the actor Forrest Whitaker (whom I don't know), and I had gone to some location for a golf weekend. We were late in getting to the airport and were waiting in line at our hotel for a cab. Brad got impatient and violently threw a cab driver out of one cab and instructed the Forrest Whitaker guy to drive to the airport. We got in. Sadly, the pseudo-Whitaker was a bad driver and was crashing into things left and right on our way. By the time we got to the airport, the cab had lost both side view mirrors and was smoking. He pulled up to the skycaps and left the car on the curb. At this point, Brad urgently explained that we all had to take the fall together. I pointed out that this was pretty crappy, since it was his idea, and if Whitaker had only listened to me we'd have left the cab in the rental car return lot, thus being anonymous by the time we got to the airport (hey, it's dream logic, okay?) Somehow I got on an earlier plane than them. Brad had also accidentally packed his expensive watch in my carry-on bag (it was even inscribed on the back by Angelina, which I made sure to point out to my wife). And that was the end of that.
The third dream was simple and short. Tiger Woods and I were members at a golf club and he was asking me for wine advice. A much more pleasant dream than the others! Of course this is the one that I woke from before the plot could develop...
I had a dream prior to the ones noted above and it was more distinctly unpleasant than the ones I broke out. I think this was also the case during induction -- I remember dreams that conveyed very low self-worth, in particular. Happily these seem to be decreasing in both frequency and moroseness as time goes on.
The vivid dreams stopped for me about three days ago. The final three dreams I had weren't nightmares but they also weren't free of disturbing elements. In the first one, I was involved in a car chase for some reason and the car I was driving (which corresponded to my real-life car) was demolished. I made it out alive, though, and the silver lining was that the car was going to be completely replaced by my insurance company. Since my real-life car needs to have all four expensive tires replaced, I viewed this is as good outcome.
The second dream was even more peculiar. Brad Pitt (whom I don't know), some unknown dreamworld "friend of mine" (not a friend in real life) who looked a bit like the actor Forrest Whitaker (whom I don't know), and I had gone to some location for a golf weekend. We were late in getting to the airport and were waiting in line at our hotel for a cab. Brad got impatient and violently threw a cab driver out of one cab and instructed the Forrest Whitaker guy to drive to the airport. We got in. Sadly, the pseudo-Whitaker was a bad driver and was crashing into things left and right on our way. By the time we got to the airport, the cab had lost both side view mirrors and was smoking. He pulled up to the skycaps and left the car on the curb. At this point, Brad urgently explained that we all had to take the fall together. I pointed out that this was pretty crappy, since it was his idea, and if Whitaker had only listened to me we'd have left the cab in the rental car return lot, thus being anonymous by the time we got to the airport (hey, it's dream logic, okay?) Somehow I got on an earlier plane than them. Brad had also accidentally packed his expensive watch in my carry-on bag (it was even inscribed on the back by Angelina, which I made sure to point out to my wife). And that was the end of that.
The third dream was simple and short. Tiger Woods and I were members at a golf club and he was asking me for wine advice. A much more pleasant dream than the others! Of course this is the one that I woke from before the plot could develop...
I had a dream prior to the ones noted above and it was more distinctly unpleasant than the ones I broke out. I think this was also the case during induction -- I remember dreams that conveyed very low self-worth, in particular. Happily these seem to be decreasing in both frequency and moroseness as time goes on.
Friday, July 24, 2009
Quick update on a few fronts...
First of all, I forgot to mention this yesterday but I finally shed the last couple of pounds from the dex this time out. It was a 15 pound swing up and down. I am now three pounds lighter than when I started treatment six months ago. Sadly, the composition of those pounds has shifted away from muscle to fat as the dex (and inactivity) has destroyed a lot of muscle. I can't say I look forward to physical therapy, but I do look forward to being on the other side of it.
Lab results from yesterday are generally good. In fact they are quite good, with the exception of the M spike which remains stable at "trace" levels. This prompts the question: would "trace" become "zero" -- and would it be immunofixation negative at that -- with another round of consolidation. Or is what I have had, plus what I will get in maintenance, enough. Obviously, this is a question for BB. We were originally supposed to meet with him on Monday, but our APN decided to cancel that since there wouldn't be a point in it unless I was ready to be discharged. She wanted to see if I would still be neutropenic.
And on that note, I turned the corner today. Yesterdays WBC was 0.55, and todays is 0.6. I suspect that by Sunday, I will no longer be neutropenic. Hopefully this will be the last time in my life that my immune system is destroyed!
I also got the last Velcade push today. This represents the final medicine of the primary protocol here. There's a lot to do in maintenance therapy, but that's it as far as killing cancer in Little Rock. Unless, of course, we decide that another round of consolidation therapy is in order. I was mulling that over today as we walked to the car, and all I could think of was the recurring theme in M*A*S*H where Hawkeye kept complaining about more points being required before he could rotate back to Maine. I'm struggling now to recall the town where his character was from...Wikipedia is just a click away but I think I'll let this one rest.
My hemoglobin is in the 12s, so I don't feel nearly exhausted as I have in the past. Hopefully this will continue to recover. I don't know what I would do with myself if it were squarely in the "normal" range! Platelets fell to 29 today. We'll see if that is the bottom or if they fall further. They probably won't infuse me with more unless it falls tomorrow to well below 20.
All the electrolytes look good. The RDW (the variability in the size of the red blood cells) is now normal. This is a common out-of-whack number for patients with MM so I take that as a good sign.
They also ran cholesterol, which was not fasting, and it came in around 254. This is high, were I fasting, but we don't know what it is without fasting so I asked the APN to include that with tomorrow's tests and I will not eat anything in the morning. It's a treat but also a headache to be focused on cholestrol in my blood numbers for a change. It brings me back to considering whether or not to go on Lipitor, since at least one crack-pot out there thinks Lipitor caused my cancer. I've also been told that Revlimind reduces cholesterol, and I've been told that the renewed immune system may better manage cholesterol production. We'll see how this all shakes out in the weeks and months to come.
That's about all I can think of right now...so off to bed it is.
Oh...Hawkeye Pierce was from Crabapple Cove. I had to look it up after all. ;)
Lab results from yesterday are generally good. In fact they are quite good, with the exception of the M spike which remains stable at "trace" levels. This prompts the question: would "trace" become "zero" -- and would it be immunofixation negative at that -- with another round of consolidation. Or is what I have had, plus what I will get in maintenance, enough. Obviously, this is a question for BB. We were originally supposed to meet with him on Monday, but our APN decided to cancel that since there wouldn't be a point in it unless I was ready to be discharged. She wanted to see if I would still be neutropenic.
And on that note, I turned the corner today. Yesterdays WBC was 0.55, and todays is 0.6. I suspect that by Sunday, I will no longer be neutropenic. Hopefully this will be the last time in my life that my immune system is destroyed!
I also got the last Velcade push today. This represents the final medicine of the primary protocol here. There's a lot to do in maintenance therapy, but that's it as far as killing cancer in Little Rock. Unless, of course, we decide that another round of consolidation therapy is in order. I was mulling that over today as we walked to the car, and all I could think of was the recurring theme in M*A*S*H where Hawkeye kept complaining about more points being required before he could rotate back to Maine. I'm struggling now to recall the town where his character was from...Wikipedia is just a click away but I think I'll let this one rest.
My hemoglobin is in the 12s, so I don't feel nearly exhausted as I have in the past. Hopefully this will continue to recover. I don't know what I would do with myself if it were squarely in the "normal" range! Platelets fell to 29 today. We'll see if that is the bottom or if they fall further. They probably won't infuse me with more unless it falls tomorrow to well below 20.
All the electrolytes look good. The RDW (the variability in the size of the red blood cells) is now normal. This is a common out-of-whack number for patients with MM so I take that as a good sign.
They also ran cholesterol, which was not fasting, and it came in around 254. This is high, were I fasting, but we don't know what it is without fasting so I asked the APN to include that with tomorrow's tests and I will not eat anything in the morning. It's a treat but also a headache to be focused on cholestrol in my blood numbers for a change. It brings me back to considering whether or not to go on Lipitor, since at least one crack-pot out there thinks Lipitor caused my cancer. I've also been told that Revlimind reduces cholesterol, and I've been told that the renewed immune system may better manage cholesterol production. We'll see how this all shakes out in the weeks and months to come.
That's about all I can think of right now...so off to bed it is.
Oh...Hawkeye Pierce was from Crabapple Cove. I had to look it up after all. ;)
Wednesday, July 22, 2009
The worst song by the band Rush...
...is probably one from their little-listened-to self-titled CD. The song is called "I Think I'm Going Bald." And it's appropriate. I've been running my hand over my head to check. I was JUST noticing that the hair is starting to come back in pretty evenly...and now my hand is full of hair.
Dammit.
Oh well. In the scheme of things, it doesn't matter at all.
This is a good time for me to note that while I am frustrated by the fact that I am not *quite* in CR, I remain humbled by the experience of those around me. Some have fared very well -- a few of the people that I've met along the way are in CR and look healthy, happy, and ready to resume their life. Others have struggled -- whether because the treatment itself has brutalized them, or the cancer has not responded as they'd hoped.
While I am by no means fortunate to have been stricken with this cancer, I remain very thankful that I have tolerated treatment as well as I have, and I remain very thankful that so far it appears to be directionally headed toward remission. My thoughts and prayers go out to those who struggle with MM and whose fight is more difficult than my own.
Dammit.
Oh well. In the scheme of things, it doesn't matter at all.
This is a good time for me to note that while I am frustrated by the fact that I am not *quite* in CR, I remain humbled by the experience of those around me. Some have fared very well -- a few of the people that I've met along the way are in CR and look healthy, happy, and ready to resume their life. Others have struggled -- whether because the treatment itself has brutalized them, or the cancer has not responded as they'd hoped.
While I am by no means fortunate to have been stricken with this cancer, I remain very thankful that I have tolerated treatment as well as I have, and I remain very thankful that so far it appears to be directionally headed toward remission. My thoughts and prayers go out to those who struggle with MM and whose fight is more difficult than my own.
Nothing new to report, but one piece of info on shots for those about to undergo this...
Lab results from yesterday very normal. Platelets down to 87, as expected. Whites recovered to 4.4 or so, which is the peak before the crash. Everything else looks good.
The sole little tidbit of into today comes to the difference in pain between a Lovinox injection (which is given when on thalidomide and dex to prevent deep vein thrombosis / blood clots) and a Neupogyn injection (which is given to stimulate white blood cell growth).
Neupogyn hurts more.
That is all.
The sole little tidbit of into today comes to the difference in pain between a Lovinox injection (which is given when on thalidomide and dex to prevent deep vein thrombosis / blood clots) and a Neupogyn injection (which is given to stimulate white blood cell growth).
Neupogyn hurts more.
That is all.
Tuesday, July 21, 2009
Consistent labs, inconsistent points of view on lesser matters
Well, they were quick in the lab and I got the results of yesterday's blood draw, which were consistent with last Thursday. Trace M-protein in the blood. On the whole, this is good -- I'd rather have two consecutive readings which confirm the low number than have it bounce up. Of course I'd gotten accustomed to the notion of it being gone, but I must remember these are very early days. We could be seeing the ongoing impact of my FIRST transplant, much less the second, much less the consolidation treatment. I am confident that "trace" will become "none" -- it's just a matter of time.
Having said that...SOON, PLEASE. :)
The APN confirmed that trace is less than 0.1. She said we might also see a marking indicating that they aren't able to tell whether it is there or not. She said that trace amounts of lambda is common in the general population. Perhaps. All I know is, I want CR in order to feel good about the likelihood of putting this all behind me forever, and in the event that I ever want to purchase more life insurance they will want to know more than "it's probably nothing."
Other labs were more or less as expected. My WBC was at 1.75 yesterday so today it's probably no more than 1 and on its way down. Electrolytes were all good. Liver numbers are even settling down -- perhaps it was the Melphalan that irritated the liver. Who knows. Kidneys are champs. I am anemic and platelets are falling, down to 117 and counting. All par for the course.
I asked a few things that I still don't get consistent answers on.
* Would I be likely to lose the hair? So far, so good...except it wasn't really until maybe 10 days after my Adriamycin last time that it fell out. Now obviously losing one's hair is no big deal at all in the scheme of things, but it did take five months to grow back to the state where it is now, and I'd just like some idea of whether or not I should be shaving it in preparation for it to fall out, or if it will come back in at this point.
* How long will I be neutropenic? This is of interest because we want to GET HOME and call our primary therapy a day. BB had told me (as had BJ, his assistant) that neutropenia from consolidation is less severe because the dosage is reduced. However the APN pointed out that unlike after the transplants, I'm not getting any cells, so the recovery isn't as quick. She thought, in any case, I would probably be out of it by next Monday or thereabouts. We shall see. I have been a quick responder in the past so hopefully my marrow's got another round of cells in it.
* Do I need reimmunization? This is a new one. I came across a mention of this topic in another MM blog last night, and I remember asking the question very early on of one of the doctors with whom I spoke but I honestly can't remember the answer. From the limited Google search I did, it looks like there (a) isn't a lot written on this, and (b) there doesn't seem to be a consensus. What a shock -- lack of consensus in Myeloma treatment! I will speak with BB about this when I meet with him -- the meeting has been pushed back from this Thursday to next Monday since I won't be able to be discharged on Thursday anyway, and that will allow Monday to be a more substantive appointment (including more updated lab data). My hunch is BB will say that no reimmunization is necessary. In fact from a conversation I had, which I believe was recorded here, one of his former patients said that BB believes the immune system is stronger post transplant than before. We shall see.
Lastly, I am trying to work out the logistics for maintenance care. More on this tomorrow -- I'm starving and it's time to eat!
Having said that...SOON, PLEASE. :)
The APN confirmed that trace is less than 0.1. She said we might also see a marking indicating that they aren't able to tell whether it is there or not. She said that trace amounts of lambda is common in the general population. Perhaps. All I know is, I want CR in order to feel good about the likelihood of putting this all behind me forever, and in the event that I ever want to purchase more life insurance they will want to know more than "it's probably nothing."
Other labs were more or less as expected. My WBC was at 1.75 yesterday so today it's probably no more than 1 and on its way down. Electrolytes were all good. Liver numbers are even settling down -- perhaps it was the Melphalan that irritated the liver. Who knows. Kidneys are champs. I am anemic and platelets are falling, down to 117 and counting. All par for the course.
I asked a few things that I still don't get consistent answers on.
* Would I be likely to lose the hair? So far, so good...except it wasn't really until maybe 10 days after my Adriamycin last time that it fell out. Now obviously losing one's hair is no big deal at all in the scheme of things, but it did take five months to grow back to the state where it is now, and I'd just like some idea of whether or not I should be shaving it in preparation for it to fall out, or if it will come back in at this point.
* How long will I be neutropenic? This is of interest because we want to GET HOME and call our primary therapy a day. BB had told me (as had BJ, his assistant) that neutropenia from consolidation is less severe because the dosage is reduced. However the APN pointed out that unlike after the transplants, I'm not getting any cells, so the recovery isn't as quick. She thought, in any case, I would probably be out of it by next Monday or thereabouts. We shall see. I have been a quick responder in the past so hopefully my marrow's got another round of cells in it.
* Do I need reimmunization? This is a new one. I came across a mention of this topic in another MM blog last night, and I remember asking the question very early on of one of the doctors with whom I spoke but I honestly can't remember the answer. From the limited Google search I did, it looks like there (a) isn't a lot written on this, and (b) there doesn't seem to be a consensus. What a shock -- lack of consensus in Myeloma treatment! I will speak with BB about this when I meet with him -- the meeting has been pushed back from this Thursday to next Monday since I won't be able to be discharged on Thursday anyway, and that will allow Monday to be a more substantive appointment (including more updated lab data). My hunch is BB will say that no reimmunization is necessary. In fact from a conversation I had, which I believe was recorded here, one of his former patients said that BB believes the immune system is stronger post transplant than before. We shall see.
Lastly, I am trying to work out the logistics for maintenance care. More on this tomorrow -- I'm starving and it's time to eat!
Monday, July 20, 2009
Progress!
First, I am neutropenic. I know this because I am utterly exhausted. It started to hit me yesterday afternoon when I was inexplicably dragging. By now, it's all I can do to stand up. But this is par for the course and I'm not going to be concerned about it.
Second, that Lasix (the drug that induces urination to release the retained water) does work but it happened over several days, not the terrifying dam-bursting situation that I thought was going to occur. This has been hell on sleep, because I'm constantly getting up to use the bathroom, but I have lost 8 pounds in two days and have only 3-4 more before I am back to where I was before this last round of consolidation chemo.
Now...with that out of the way...the exciting news. Bear in mind, this is based on the blood draw from last Thursday, the 16th, so it doesn't reflect the full impact of this cycle of chemotherapy.
I'll give it to you straight from the lab paper: "Trace M-protein is present in low quantity in the gamma-region but cannot be accurately quantified due to presence of other immunoglobulins."
Some quick translation here. Immunoglobulins of different types -- called gamma, alpha, beta, etc. -- are present in the blood. Different flavors of myeloma can affect each type of plasma cell. I have the most common form of Myeloma, IgG (immuoglobulin gamma). Meaning that the "gamma" immunoglobulin in my blood contains both "good" immunoglobulin created by healthy plasma cells, as well as this monoclonal "bad" protein created by the cancer cells. So when they are looking in the "gamma region" for the M-protein, they are saying that within the gamma protein, there is some of the bad protein, but that there isn't enough to accurately quantify exactly how much. The margin of error of the test is probably greater than the amount of the protein!
"Trace" sounds very low indeed! Not zero, but very low. It's unclear if this is less than 0.1, or simply less than some other arbitrary number at which they stop measuring (could be anything lower than 0.4), but it represents a clear response to consolidation. As I mentioned there were two more days of chemo after this pull, plus more Velcade, thalidomide, dex, etc. So with any luck, I will be even lower right now. It seems to me they wouldn't arbitrarily cut off at 0.4 -- I would think "trace" means one less significant digit or something like that, but there's no way to know for sure (until I pester BB about it later in the week).
We will know more from today's blood draw on Thursday, which is when I am also going to be visiting with BB. In the meantime, I will have daily lab visits and hopefully a quick rebound from neutropenia. With luck, the data on Thursday will be even more definitive than this information.
Certainly this trajectory is a positive one -- I am headed in the direction of CR, which as you know I have been somewhat fixated upon. :)
The strata, one more time:
Very Good Partial Remission -- normal marrow under basic analysis, some residual M-protein (this is where I was)
Near Complete Remission -- as above with no residual M-protein under electrophoresis (the standard test)
Complete Remission -- as above with no residual M-protein under immunofixation (a more sensitive test)
Stringent CR -- as above with normal marrow under immunofluorescence (very sensitive test)
Thanks for all the well-wishes, prayers and support. I will keep focused, and keep you posted!
Second, that Lasix (the drug that induces urination to release the retained water) does work but it happened over several days, not the terrifying dam-bursting situation that I thought was going to occur. This has been hell on sleep, because I'm constantly getting up to use the bathroom, but I have lost 8 pounds in two days and have only 3-4 more before I am back to where I was before this last round of consolidation chemo.
Now...with that out of the way...the exciting news. Bear in mind, this is based on the blood draw from last Thursday, the 16th, so it doesn't reflect the full impact of this cycle of chemotherapy.
I'll give it to you straight from the lab paper: "Trace M-protein is present in low quantity in the gamma-region but cannot be accurately quantified due to presence of other immunoglobulins."
Some quick translation here. Immunoglobulins of different types -- called gamma, alpha, beta, etc. -- are present in the blood. Different flavors of myeloma can affect each type of plasma cell. I have the most common form of Myeloma, IgG (immuoglobulin gamma). Meaning that the "gamma" immunoglobulin in my blood contains both "good" immunoglobulin created by healthy plasma cells, as well as this monoclonal "bad" protein created by the cancer cells. So when they are looking in the "gamma region" for the M-protein, they are saying that within the gamma protein, there is some of the bad protein, but that there isn't enough to accurately quantify exactly how much. The margin of error of the test is probably greater than the amount of the protein!
"Trace" sounds very low indeed! Not zero, but very low. It's unclear if this is less than 0.1, or simply less than some other arbitrary number at which they stop measuring (could be anything lower than 0.4), but it represents a clear response to consolidation. As I mentioned there were two more days of chemo after this pull, plus more Velcade, thalidomide, dex, etc. So with any luck, I will be even lower right now. It seems to me they wouldn't arbitrarily cut off at 0.4 -- I would think "trace" means one less significant digit or something like that, but there's no way to know for sure (until I pester BB about it later in the week).
We will know more from today's blood draw on Thursday, which is when I am also going to be visiting with BB. In the meantime, I will have daily lab visits and hopefully a quick rebound from neutropenia. With luck, the data on Thursday will be even more definitive than this information.
Certainly this trajectory is a positive one -- I am headed in the direction of CR, which as you know I have been somewhat fixated upon. :)
The strata, one more time:
Very Good Partial Remission -- normal marrow under basic analysis, some residual M-protein (this is where I was)
Near Complete Remission -- as above with no residual M-protein under electrophoresis (the standard test)
Complete Remission -- as above with no residual M-protein under immunofixation (a more sensitive test)
Stringent CR -- as above with normal marrow under immunofluorescence (very sensitive test)
Thanks for all the well-wishes, prayers and support. I will keep focused, and keep you posted!
Saturday, July 18, 2009
(Edited and updated and corrected!) No more chemo, no new information, other than tips on female facial hair
I went into the clinic today and waited for 90 minutes before they were ready for me...slow day but not a lot of nurses working in the infusion center.
My chemo bags were disconnected -- hurray! -- and my labs were uneventful. White cells have come back down from their peak and platelets are starting to fall, so I would guess I will be neutropenic in 3-4 more days. They do not have M-spike data for me from last Thursday's pull, and it will be anticlimactic anyway since I will not see the full benefit of the poison until the Neutropenia has set in. But frankly any movement off the 0.5 will be a good sign. My tastebuds are torched completely so I know the fast-dividing cells have in fact been dying.
A quick note to those following the GI issues, either for personal fascination or for a more legitimate reason (i.e. going through treatment). On balance, the prescribed amount of medication (2 Senna tablets per day for stool softener, 2 docusan tablets per day as a laxative) was appropriate given the thalidomide and dex but can probably be eased off on day 3 of 4. Enough said.
I have put on another 15 pounds during this course of Dex, hopefully entirely water-weight again. Although I'd been told it's better to get rid of this naturally as one's body releases the fluid, the APN wanted to give me an IV push of some kind of drug (sounded like Ricin but I know that is nerve gas so that can't be right...or can it?). I had previously been prescribed a pill, but was told they wanted to hit me with the high-powered stuff. So be it, I thought. Although I was worried a little bit.
I asked the nurse if I would make it back home. I told her that I was about 10 minutes away. She said, without a hint of irony, "you should make it." Then I asked "are we talking frequency issues here, or am I going to be stuck in a bathroom for 90 minutes unabated?" She paused for a long time. I pointed out that this was supposed to be a rhetorical question, asked for humor's sake, and easily answered. She finally said "well, it's 3PM now...you should be done by dark."
So after this warning that should have been enough to terrify most people...turned out nothing has happened. It's dark, and I've peed about three times, and I'm bloated as ever...or then some. So I am still waiting for some horrible dam-breaking event that will probably occur in the dead of night, which keeps me from taking the Ambien that I so desperately want to take.
So...to the facial hair comment which must again be filed under (1) minor faux paus from me, and (2) inexplicable offers of too much information on the part of nurses. My friend Matt, who is visiting, sports a goatee. The nurse (not the one who administered my meds but the one who took my vitals), who I have seen many times before, sat me down and asked how the kids were. I said that my friend was visiting me to give Jill a break. I then joked and said, "actually, this is still Jill, but her hormone pills have finally kicked in."
Then the nurse said "you know what they say about women with beards."
I gasped. She did, indeed, have tufts of beard beneath about one-third of her chin.
Here I was, making a harmless little joke that should have ended with a chuckle and that would be that. Instead, it was rolling out the red carpet for the Bearded Lady to strut her stuff. I will endeavor to do this more tactfully than did she. Women with beards, I am told by this bearded woman, are evidently accomplished in the marital arts. Or so she had been told, presumably by other bearded women.
To those women reading this: do not grow beards under the illusion this will impress men. I don't know who has been spreading this falsehood but trust me, beards are not considered an attractive element in a woman's appearance by most.
I noted upon leaving that my Potassium was 3.4, rather than the normal 3.5. Nothing to worry about, I was told. I asked about eating a potato and was told not to worry about it. So upon returning and deciding I wanted to sleep for a couple of hours, I was interrupted by a phone call from the infusion center. My Potassium had fallen in today's labs to 3.2, and I needed to come in to get an infuser. I asked if I could just eat some potatoes. I was told no, something had to be done, and I had to pick up the infuser. Any time before 7, I was told.
At 6:20, I went into the infusion center. It was a slow day, so the pharmacy had closed up and there was no infuser for me. I was told to...eat some potatoes.
My chemo bags were disconnected -- hurray! -- and my labs were uneventful. White cells have come back down from their peak and platelets are starting to fall, so I would guess I will be neutropenic in 3-4 more days. They do not have M-spike data for me from last Thursday's pull, and it will be anticlimactic anyway since I will not see the full benefit of the poison until the Neutropenia has set in. But frankly any movement off the 0.5 will be a good sign. My tastebuds are torched completely so I know the fast-dividing cells have in fact been dying.
A quick note to those following the GI issues, either for personal fascination or for a more legitimate reason (i.e. going through treatment). On balance, the prescribed amount of medication (2 Senna tablets per day for stool softener, 2 docusan tablets per day as a laxative) was appropriate given the thalidomide and dex but can probably be eased off on day 3 of 4. Enough said.
I have put on another 15 pounds during this course of Dex, hopefully entirely water-weight again. Although I'd been told it's better to get rid of this naturally as one's body releases the fluid, the APN wanted to give me an IV push of some kind of drug (sounded like Ricin but I know that is nerve gas so that can't be right...or can it?). I had previously been prescribed a pill, but was told they wanted to hit me with the high-powered stuff. So be it, I thought. Although I was worried a little bit.
I asked the nurse if I would make it back home. I told her that I was about 10 minutes away. She said, without a hint of irony, "you should make it." Then I asked "are we talking frequency issues here, or am I going to be stuck in a bathroom for 90 minutes unabated?" She paused for a long time. I pointed out that this was supposed to be a rhetorical question, asked for humor's sake, and easily answered. She finally said "well, it's 3PM now...you should be done by dark."
So after this warning that should have been enough to terrify most people...turned out nothing has happened. It's dark, and I've peed about three times, and I'm bloated as ever...or then some. So I am still waiting for some horrible dam-breaking event that will probably occur in the dead of night, which keeps me from taking the Ambien that I so desperately want to take.
So...to the facial hair comment which must again be filed under (1) minor faux paus from me, and (2) inexplicable offers of too much information on the part of nurses. My friend Matt, who is visiting, sports a goatee. The nurse (not the one who administered my meds but the one who took my vitals), who I have seen many times before, sat me down and asked how the kids were. I said that my friend was visiting me to give Jill a break. I then joked and said, "actually, this is still Jill, but her hormone pills have finally kicked in."
Then the nurse said "you know what they say about women with beards."
I gasped. She did, indeed, have tufts of beard beneath about one-third of her chin.
Here I was, making a harmless little joke that should have ended with a chuckle and that would be that. Instead, it was rolling out the red carpet for the Bearded Lady to strut her stuff. I will endeavor to do this more tactfully than did she. Women with beards, I am told by this bearded woman, are evidently accomplished in the marital arts. Or so she had been told, presumably by other bearded women.
To those women reading this: do not grow beards under the illusion this will impress men. I don't know who has been spreading this falsehood but trust me, beards are not considered an attractive element in a woman's appearance by most.
I noted upon leaving that my Potassium was 3.4, rather than the normal 3.5. Nothing to worry about, I was told. I asked about eating a potato and was told not to worry about it. So upon returning and deciding I wanted to sleep for a couple of hours, I was interrupted by a phone call from the infusion center. My Potassium had fallen in today's labs to 3.2, and I needed to come in to get an infuser. I asked if I could just eat some potatoes. I was told no, something had to be done, and I had to pick up the infuser. Any time before 7, I was told.
At 6:20, I went into the infusion center. It was a slow day, so the pharmacy had closed up and there was no infuser for me. I was told to...eat some potatoes.
Friday, July 17, 2009
Gunga Din vs. Carl the Greenskeeper, VGPR vs. CR and other errata...
Thank you for all the responses to my previous blog! I'm especially tickled that my Eduardo Gianelli references prompted my big brother to respond!
My knowledge of Gunga Din (including, evidently, the titular character's proper spelling / capitalization) pales in comparison to his. But as a child of the 1980s and a golf hacker, my knowledge of Caddyshack, including Carl the Greenskeeper's many soliloquies, is not to be trifled with.
From memory, the Dalai Lama speech:
CARL: So I make my way over to Hong Hong, and I jump ship over to Tibet. And I get there, and I sign on as a jock.
AWED ASSSITANT: A jock? You mean a caddy?
CARL: (of course, stupid, learn the lingo) Yeah, a jock. A caddy. You know, a pro jock. Anyways I tell 'em I'm a pro jock, and who do you think they send me out with? The Dalai Lama himself. Twelfth son of the Lama, the flowing robes, the baldness....striking. So we tee off, and the Lama WHACKS one -- big hitter, the Lama -- into the base of a 9,000 foot crevasse. And he looks at me...and do you know what he says? Gungada...Gunga la Gunga. Gunga la Gunga. So we finish 18, and the Lama's gonna stiff me!! So I say...HEY....LAMA (he is now prodding the listener with a pitchfork for emphasis)...HOWSABOUT A LITTLE SOMETHING, YOU KNOW, FOR THE EFFORT!!! And he looks at me and he says...oh there won't be any money. But when you die...ON YOUR DEATHBED...you will receive Total Consciousness. So I got THAT going for me....which is nice.
Thank you folks, thank you.
Okay, my dear friend Dr. Bill, not sure if you were striving for perfect verisimilitude in your citation of Rick Derringer's lyrics, but if you were you should of course know they are "Rock and roll, hootchie coo, lordie mamma light my fuse." A less impressive slice of 1970s ouevre than the early days of Saturday Night Live, but important knowledge nonetheless.
Lori Puente, I did in fact meet Jan and Bruce in the infusion center yesterday (they were kind enough to stop by and introduce themselves) and we had a very nice conversation. They both say hello; Bruce looks to be in good health and spirits and we hope to grab a glass of wine with them next week. Jill and I also had a nice lunch with fellow travelers PB and CB, who it turns out at one point consulted CS, whose wife was successfully treated here eight years ago under Total Therapy 2, and who was one of the people to whom I spoke (through a completely separate set of connections) back in February. It's a small world, as my employer is fond of saying!
The night before last, when we were out to dinner with BB's assistant BJ, BB drove by on his Ducati and saw BJ's car and stopped in. We wound up eating with him and having some wine and spending three plus hours together talking about everything from politics to cars to MM treatment to my daughter's vision challenges (she has a congenital defect in her eyes called Cone Dystrophy that is a pretty nasty thing) to his very funny wit and the nature of the prickly but undeniably successful professional relationship that he and BJ have had for twenty years. Some highlights as it pertains to my treatment:
* Finally got them to opine on the likelihood of all my hair falling out from consolidation. If pressed, 30% chance it falls out. So no point in shaving the head bald right now unless I like the look.
* Where does the M-protein come from if the marrow is clean? No certainty, some of it from residual plasma cells in the blood, some of it from undetected cells in the marrow.
* BB pointed out that in cases of smoldering myeloma, where one could have a very low M-spike (under 1, say) for years that would go undetected (certainly my primary physician would never have noticed anything wrong with total protein and wouldn't have ordered a second blood panel) CR might not be achieved. It might revert to a smoldering state.
That is not satisfactory to me. And this bridges the topic from correcting pop culture references to addressing some very important observations by some of my fellow travelers in yesterday's comments fields.
First, my bias: at the 50,000 foot level, MM physicians have one of two philosophies: eradicate the disease, or control the disease.
I do NOT believe, at this point in my life, in controlling this disease in a stable state. With my M-spike where it was and my marrow where it was upon diagnosis, trying to contain this beast with dietary supplements or anything short of proven western medicine was not an option for me, and I do not hesitate in this decision one iota. I have sought, from the moment of diagnosis, the closest thing to a complete cure. BB's data shows a cure rate on the order of 60%+ for all patients (including high risk) and over 80% for low-risk patients -- and these are conservative figures as they include mortality from non-disease causes.
This was no sleeping dog. This was an angry, vicious, rabid dog about to tear me apart. And I wasn't going to calm it back down to sleep through anything less than full-out assault by Western Medicine. Moreover, I don't want to simply transform it from a biting Pit Bull to a Chihuahua nipping at my heels. I want no dog anywhere near me.
BB has more than theories or test-tube results. He has hundreds of patients who have gone through the exact same therapeutic regimen. So when I say that achieving CC has a different result than achieving VGPR, this is based on precise data. In this case, of 214 patients with at least five years under TT3 (recall that at year six, if the cancer is gone, the likelihood of recurrence is extremely low):
- of 138 who, three years after enrollment in therapy, were still in CR, 138 were still alive five years after enrollment
- of 62 who failed to achieve CR, 9 died within the fourth year, and another 3 died within the fifth year -- 20% have died
- of 4 who achieved and lost CR, one died within the fourth year, and one within the fifth year
The first three years are excluded to ensure it includes only people who completed the three year total therapy program.
This is not a qualitative "what if" difference. This is stark. For those who fell short of CR -- including very specifically near-CR (one step above where I am) and VGPR -- there is a material difference in survival. Bear in mind, too, this is simply "overall survival." Not the true gold standard of "event free survival" -- since by definition anybody not in CR is living with an "event." IT TAKES SIX YEARS OF EVENT FREE SURVIVAL TO BE CONFIDENT THAT ONE IS CURED.
In the infusion center yesterday, I sat across from a woman who underwent a tandem transplant here three years ago. At that time, she had come in very ill, and didn't go through the full-blown Total Therapy program, but she did improve. She achieved a VGPR and went back to a smoldering state. And yet, here she is, three years later, undergoing more therapy. This is NOT where I want to be sitting in three years' time.
I do not believe in getting one transplant and waiting for the return of this beast. I do not believe in "the cure" or "the treatment" being worse than "the disease." The disease, unchecked, leads to death. The disease, absent the most aggressive therapy available, almost invariably leads to recurrence with reduced effectiveness of existing treatment (though to be sure, there is a lot in the pipeline and I do believe that within 10 years there should be a cure from these novel agents). The disease is far worse than anything that can be done to get rid of it.
Doctors who claim that VGPR is the same as CR have the burden of proving this point of view. And every one of them is completely colored by their bias that Total Therapy is not curative. The most they will say is that for a subset of patients, many undergoing the Arkansas protocol have done very well. But this turns a blind eye to the real, demonstrable accomplishments down here. And I think it is a false view.
I say this having had, I know, a very easy time with chemo relative to what many others experience, and relative to my own initial concerns. As I type this, the third of four days with this bag of poison is coming to a close and I've had no side effects, save the bloating from Dex which doesn't appear to be quite as bad as last time.
But I also say this having observed the preponderance of literature on dealing with transplants and how one's life "is never the same" and one will measure "a new birthday from the date of transplant." These statements, while 100% valid for those experiencing them, are part of what motivated me to write this blog. I approach it differently. I got sick. I have a range of available treatments. I chose the most aggressive one with the expectation -- and now perhaps hope, but still one grounded in data -- that I will be CURED, not simply treated. I refused from day two to let "nothing be the same" because that mentality already gives in to the disease. With a bit of luck, the continued efficacy of the treatment, and the care and support of my family, friends (including those who read this blog) and the fine doctors and nurses to whom I have entrusted my health, things will INDEED be very much the same. Except perhaps I'll be a little wiser, and perhaps I'll had have the chance, through my experiences and through sharing them here, to provide some perspective to others facing this diagnosis that may contribute a bit to the spectrum of information that is out there.
I love and appreciate you all.
Nick
My knowledge of Gunga Din (including, evidently, the titular character's proper spelling / capitalization) pales in comparison to his. But as a child of the 1980s and a golf hacker, my knowledge of Caddyshack, including Carl the Greenskeeper's many soliloquies, is not to be trifled with.
From memory, the Dalai Lama speech:
CARL: So I make my way over to Hong Hong, and I jump ship over to Tibet. And I get there, and I sign on as a jock.
AWED ASSSITANT: A jock? You mean a caddy?
CARL: (of course, stupid, learn the lingo) Yeah, a jock. A caddy. You know, a pro jock. Anyways I tell 'em I'm a pro jock, and who do you think they send me out with? The Dalai Lama himself. Twelfth son of the Lama, the flowing robes, the baldness....striking. So we tee off, and the Lama WHACKS one -- big hitter, the Lama -- into the base of a 9,000 foot crevasse. And he looks at me...and do you know what he says? Gungada...Gunga la Gunga. Gunga la Gunga. So we finish 18, and the Lama's gonna stiff me!! So I say...HEY....LAMA (he is now prodding the listener with a pitchfork for emphasis)...HOWSABOUT A LITTLE SOMETHING, YOU KNOW, FOR THE EFFORT!!! And he looks at me and he says...oh there won't be any money. But when you die...ON YOUR DEATHBED...you will receive Total Consciousness. So I got THAT going for me....which is nice.
Thank you folks, thank you.
Okay, my dear friend Dr. Bill, not sure if you were striving for perfect verisimilitude in your citation of Rick Derringer's lyrics, but if you were you should of course know they are "Rock and roll, hootchie coo, lordie mamma light my fuse." A less impressive slice of 1970s ouevre than the early days of Saturday Night Live, but important knowledge nonetheless.
Lori Puente, I did in fact meet Jan and Bruce in the infusion center yesterday (they were kind enough to stop by and introduce themselves) and we had a very nice conversation. They both say hello; Bruce looks to be in good health and spirits and we hope to grab a glass of wine with them next week. Jill and I also had a nice lunch with fellow travelers PB and CB, who it turns out at one point consulted CS, whose wife was successfully treated here eight years ago under Total Therapy 2, and who was one of the people to whom I spoke (through a completely separate set of connections) back in February. It's a small world, as my employer is fond of saying!
The night before last, when we were out to dinner with BB's assistant BJ, BB drove by on his Ducati and saw BJ's car and stopped in. We wound up eating with him and having some wine and spending three plus hours together talking about everything from politics to cars to MM treatment to my daughter's vision challenges (she has a congenital defect in her eyes called Cone Dystrophy that is a pretty nasty thing) to his very funny wit and the nature of the prickly but undeniably successful professional relationship that he and BJ have had for twenty years. Some highlights as it pertains to my treatment:
* Finally got them to opine on the likelihood of all my hair falling out from consolidation. If pressed, 30% chance it falls out. So no point in shaving the head bald right now unless I like the look.
* Where does the M-protein come from if the marrow is clean? No certainty, some of it from residual plasma cells in the blood, some of it from undetected cells in the marrow.
* BB pointed out that in cases of smoldering myeloma, where one could have a very low M-spike (under 1, say) for years that would go undetected (certainly my primary physician would never have noticed anything wrong with total protein and wouldn't have ordered a second blood panel) CR might not be achieved. It might revert to a smoldering state.
That is not satisfactory to me. And this bridges the topic from correcting pop culture references to addressing some very important observations by some of my fellow travelers in yesterday's comments fields.
First, my bias: at the 50,000 foot level, MM physicians have one of two philosophies: eradicate the disease, or control the disease.
I do NOT believe, at this point in my life, in controlling this disease in a stable state. With my M-spike where it was and my marrow where it was upon diagnosis, trying to contain this beast with dietary supplements or anything short of proven western medicine was not an option for me, and I do not hesitate in this decision one iota. I have sought, from the moment of diagnosis, the closest thing to a complete cure. BB's data shows a cure rate on the order of 60%+ for all patients (including high risk) and over 80% for low-risk patients -- and these are conservative figures as they include mortality from non-disease causes.
This was no sleeping dog. This was an angry, vicious, rabid dog about to tear me apart. And I wasn't going to calm it back down to sleep through anything less than full-out assault by Western Medicine. Moreover, I don't want to simply transform it from a biting Pit Bull to a Chihuahua nipping at my heels. I want no dog anywhere near me.
BB has more than theories or test-tube results. He has hundreds of patients who have gone through the exact same therapeutic regimen. So when I say that achieving CC has a different result than achieving VGPR, this is based on precise data. In this case, of 214 patients with at least five years under TT3 (recall that at year six, if the cancer is gone, the likelihood of recurrence is extremely low):
- of 138 who, three years after enrollment in therapy, were still in CR, 138 were still alive five years after enrollment
- of 62 who failed to achieve CR, 9 died within the fourth year, and another 3 died within the fifth year -- 20% have died
- of 4 who achieved and lost CR, one died within the fourth year, and one within the fifth year
The first three years are excluded to ensure it includes only people who completed the three year total therapy program.
This is not a qualitative "what if" difference. This is stark. For those who fell short of CR -- including very specifically near-CR (one step above where I am) and VGPR -- there is a material difference in survival. Bear in mind, too, this is simply "overall survival." Not the true gold standard of "event free survival" -- since by definition anybody not in CR is living with an "event." IT TAKES SIX YEARS OF EVENT FREE SURVIVAL TO BE CONFIDENT THAT ONE IS CURED.
In the infusion center yesterday, I sat across from a woman who underwent a tandem transplant here three years ago. At that time, she had come in very ill, and didn't go through the full-blown Total Therapy program, but she did improve. She achieved a VGPR and went back to a smoldering state. And yet, here she is, three years later, undergoing more therapy. This is NOT where I want to be sitting in three years' time.
I do not believe in getting one transplant and waiting for the return of this beast. I do not believe in "the cure" or "the treatment" being worse than "the disease." The disease, unchecked, leads to death. The disease, absent the most aggressive therapy available, almost invariably leads to recurrence with reduced effectiveness of existing treatment (though to be sure, there is a lot in the pipeline and I do believe that within 10 years there should be a cure from these novel agents). The disease is far worse than anything that can be done to get rid of it.
Doctors who claim that VGPR is the same as CR have the burden of proving this point of view. And every one of them is completely colored by their bias that Total Therapy is not curative. The most they will say is that for a subset of patients, many undergoing the Arkansas protocol have done very well. But this turns a blind eye to the real, demonstrable accomplishments down here. And I think it is a false view.
I say this having had, I know, a very easy time with chemo relative to what many others experience, and relative to my own initial concerns. As I type this, the third of four days with this bag of poison is coming to a close and I've had no side effects, save the bloating from Dex which doesn't appear to be quite as bad as last time.
But I also say this having observed the preponderance of literature on dealing with transplants and how one's life "is never the same" and one will measure "a new birthday from the date of transplant." These statements, while 100% valid for those experiencing them, are part of what motivated me to write this blog. I approach it differently. I got sick. I have a range of available treatments. I chose the most aggressive one with the expectation -- and now perhaps hope, but still one grounded in data -- that I will be CURED, not simply treated. I refused from day two to let "nothing be the same" because that mentality already gives in to the disease. With a bit of luck, the continued efficacy of the treatment, and the care and support of my family, friends (including those who read this blog) and the fine doctors and nurses to whom I have entrusted my health, things will INDEED be very much the same. Except perhaps I'll be a little wiser, and perhaps I'll had have the chance, through my experiences and through sharing them here, to provide some perspective to others facing this diagnosis that may contribute a bit to the spectrum of information that is out there.
I love and appreciate you all.
Nick
Wednesday, July 15, 2009
What a difference a day makes (in labs)
This is something that hopefully everybody with this diagnosis -- or anybody looking at their blood on a daily basis for some other reason, God forbid -- can benefit from.
I went to the infusion center today to get my 24-hour chemo pump changed. Interestingly, looks like I get the Adriamycin for four days straight while they swap out the Platinum, Cyclophosphomide and Etoposide over that time period.
Anyhow...
I got my labs from YESTERDAY back today (I prefer the 7th floor way of doing things, but they get quicker response from the lab there) and my white counts fell from 6.8 to 4.4. My Hemoglobin fell from 14.2 to 12.2 (I told you I'd be back to anemia quickly!) and my platelets rose from 170 to 180. All expected.
By my Phosphorus was 1.5 (normal is 2.0 to 4.0). And my Uric acid, which the nurse in BB's clinic had flagged as high on 7/8 when it was 8.2, was now 8.7. BB didn't think anything of it being 8.2 but I wanted to at least ask my APN about it.
So I was prescribed a bag of Rasburicase administered IV while I waited, and given an infuser of phosphorus for the road.
While the Rasburicase was dripping in and my phosphorus infuser was hooked up, I got TODAY's labs back.
Uric acid fell to 6.2, well within normal limits, and Phosphorus was at 2.5, also well within normal limits. White count up to 11 (still normal, but what a change!) and hemoglobin at 12.2. Sigh. 14 felt good while it lasted -- for about 18 hours, it seems.
I asked the APN if we should disconnect the phosphorus (the Rasburicase was already fully infused by this time) and she said that the chemo will push uric acid up, and bring phosphorus down, so we were ending up taking prophylactic measures.
That's fine by me. But it does highlight how these numbers can pop up and down and you really need to look at them in context / over time to make sure you aren't overreacting one way or another!
Generally speaking I am feeling fine, other than being exhausted from no sleep last night, and the general dex bloating that has set in (five pounds of weight gain overnight). I also got the hiccups something fierce today, which happened when I was on these drugs before, so I took a couple of Baclofen and they seem to have subsided.
Lastly, for the benefit of my two brothers who read this and anybody else who is a fan of very, very old movies...I looked to my left in the infusion center and there is a woman, probably in her late 50s, who is completely bald and who must have felt cold (despite it being 90 degrees here now) and had draped blankets over her lap and pulled another tightly over her head like a shroud. I had to do a double take but she looked just like Eduardo Gianelli (the bad guy) in the 1939 Gunda Din.
Dinner with BB's assistant Bonnie tonight, then lunch with fellow MM travellers Phil and Cassie tomorrow, and then the arrival of my friend Matt from DC for what should be the last relief mission for Jill, as she goes home for the weekend to see the kiddies. Lots to look forward to -- though perhaps nothing more fervently than the result of tomorrow's M-spike lab, which should be available on Sunday or Monday.
Be well, everyone!
I went to the infusion center today to get my 24-hour chemo pump changed. Interestingly, looks like I get the Adriamycin for four days straight while they swap out the Platinum, Cyclophosphomide and Etoposide over that time period.
Anyhow...
I got my labs from YESTERDAY back today (I prefer the 7th floor way of doing things, but they get quicker response from the lab there) and my white counts fell from 6.8 to 4.4. My Hemoglobin fell from 14.2 to 12.2 (I told you I'd be back to anemia quickly!) and my platelets rose from 170 to 180. All expected.
By my Phosphorus was 1.5 (normal is 2.0 to 4.0). And my Uric acid, which the nurse in BB's clinic had flagged as high on 7/8 when it was 8.2, was now 8.7. BB didn't think anything of it being 8.2 but I wanted to at least ask my APN about it.
So I was prescribed a bag of Rasburicase administered IV while I waited, and given an infuser of phosphorus for the road.
While the Rasburicase was dripping in and my phosphorus infuser was hooked up, I got TODAY's labs back.
Uric acid fell to 6.2, well within normal limits, and Phosphorus was at 2.5, also well within normal limits. White count up to 11 (still normal, but what a change!) and hemoglobin at 12.2. Sigh. 14 felt good while it lasted -- for about 18 hours, it seems.
I asked the APN if we should disconnect the phosphorus (the Rasburicase was already fully infused by this time) and she said that the chemo will push uric acid up, and bring phosphorus down, so we were ending up taking prophylactic measures.
That's fine by me. But it does highlight how these numbers can pop up and down and you really need to look at them in context / over time to make sure you aren't overreacting one way or another!
Generally speaking I am feeling fine, other than being exhausted from no sleep last night, and the general dex bloating that has set in (five pounds of weight gain overnight). I also got the hiccups something fierce today, which happened when I was on these drugs before, so I took a couple of Baclofen and they seem to have subsided.
Lastly, for the benefit of my two brothers who read this and anybody else who is a fan of very, very old movies...I looked to my left in the infusion center and there is a woman, probably in her late 50s, who is completely bald and who must have felt cold (despite it being 90 degrees here now) and had draped blankets over her lap and pulled another tightly over her head like a shroud. I had to do a double take but she looked just like Eduardo Gianelli (the bad guy) in the 1939 Gunda Din.
Dinner with BB's assistant Bonnie tonight, then lunch with fellow MM travellers Phil and Cassie tomorrow, and then the arrival of my friend Matt from DC for what should be the last relief mission for Jill, as she goes home for the weekend to see the kiddies. Lots to look forward to -- though perhaps nothing more fervently than the result of tomorrow's M-spike lab, which should be available on Sunday or Monday.
Be well, everyone!
A glimpse of normalcy and other observations
Let me begin with observation #1, which I've made before. Ambien has nights were it works brilliantly (the night before this past one I got 8 solid hours despite having to sleep through a two hour long thunderstorm which was the loudest my wife, a veteran of 13 years in Houston, has ever heard). And there are nights when Ambien sucks, like the evening that I am just ending, where I slept for 20 minutes and finally gave up at 5AM.
I think the combination of the chemo pump, 25+ pills and the mind-crippling fear of crumbling to a constipated fetal position on the floor must have something to do with it. I am taking both Senna and Docusate. One is a softener, the other a laxative. I will keep with these this time and hope that nothing more exotic needs to be ingested to achieve the desired normalcy.
So...the glimpse of normalcy. When I went to the lab to be connected to the bag for day 1 of 4, and get a host of other things (Velcade injection #1 of 4, PAINFUL Lovenox shot #1 of 6, antinausea agents, etc.), they gave me my labs from yesterday. For the first time since we started looking closely at these things back in February, I was not anemic. I was still at the very low end of the normal range (14-19) on Hemoglobin but I was 14.2. Now, this will be clobbered by the chemo again, but I was asking Dr. SH in Beverly Hills a few weeks ago, when it was 12.2 or so, if it was ever going to be normal again and he said "eventually, once all this chemo stops, it will have a chance to recover." So it ultimately recovered in three more weeks. One of the concerns about BB's program, voiced by KA, was that there is so much marrow-mangling being done that I might not be able to sustain normal counts when it's all said and done. BB of course said this was no problem and that they had never seen it happen, which is what KA said he would say. "But I", added KA, "am a just a quiet little voice on the sidelines whispering 'maybe it might be a problem.'"
KA and BB have a lot of mutual respect for each other and have known each other for a long time, so this was said without any professional jealousy or sniping or anything like that. In fact KA is well aware of the success of the program down here and agreed with my basic logic to pursue it.
ANYHOW...gosh what was supposed to be a quick update is getting long...so my Hemoglobin was more or less normal, and my IgG, IgA and IgM (all immune system markers which are intentionally suppressed by the medication) have returned to normal levels. IgG contains both GOOD immunoglobin from my normally functioning plasma cells as well as tainted immunoglobin from my evil, corrupt Myeloma cells. So we have brought this down from what seems, now, like an impossibly high level of 16000 to around 580, but normal is 700-1400. So getting to 800 on this last lab, particularly with a bone marrow that has no cancer in it, is good. Lastly, RDW, which measures the variability in size of red blood cells and is higher than normal in cancer patients, has almost fallen to normal levels. All good stuff.
Of course this all goes out the window now, since I started taking poison yesterday morning. But it was good to see normalcy in my blood counts for once!
All the markers are good except for two liver markers -- one of which has little-to-no correspondence to alcohol, and one of which does so it could have been elevated somewhat by the previous night's meal with BB and his wife. I had forgotten that I had a gin and tonic with the good doctor after our meal (after all, I don't want to beat cancer only to be taken down with scurvy or malaria). Evidently hematologists during the British Raj didn't look to closely at liver enzymes. At any rate, one of the three booze-related enzymes was elevated (the other two were normal) and this could be a result of the chemo, the velcade, the Fluconazole / anti fungal med, or anything else, really. The other elevated enzyme, LH, is more problematic as that is a surrogate for cancer activity. I don't want to be concerned about any single test, as my liver is still processing dead cancer and getting rid of it through the body and will continue to do so during the consolidation phase, and this aspect of my biology results in a higher LDH. But it is something that I want to keep my eye on. For the budding hematologists in the crowd, it was 280 and really needs to be below 190 to not be an unfavorable indicator of long-term prognosis.
On that topic:
* Things I have going for me according to the statistical analysis: I'm under 65, I had and have preserved Albumin (good blood protein that gets crowded out by evil blood protein when immunoglobins get out of control), low Beta-2 Microglobin (a tumor marker), low CRP (a surrogate for cancer, I found out just yesterday, in addition to general inflammation), low creatinine (meaning good kidney function), low LDH at start of therapy, no severe cytogenic abnormalities (i.e. 4;14 translocation, etc.), low risk defined by Gene Expression Profiling (GEP), and hyperdiploid subtype (this means my cells has too MANY chromosomes, rather than too FEW, which would then be hypodiploid.)
* Things I don't have going for me: only one...in addition to being in the hyperdiploid subtype, I am in the more dangerous proliferation subtype. This means that the cancer is prone to proliferation (there's a shocker to those of you with zero inductive reasoning skills). It grows at a fast rate. This we know both from the visceral predictions of Dr. SH way back when ("the fact that you got this when you're young means your system isn't good at getting rid of it, and I expect it will progress fairly quickly") and it has been borne out by the rapid growth of my protein and M-spike, which went from 8.0 and 4.4 and the time of diagnosis to highs of 12.2 and 8.0 in four months. I of course asked BB about the impact of being in the PR subgroup and he said that being low risk overcomes this. However having studied the statistical model I'm not certain that's true. It does have a very low "P-value" (.001 for those following along with a statistics handbook) which means that the certainty of its impact on survival rate is very low. For example, other factors are typically .15, .35, etc meaning they have a 15% of 35% likelihood of impacting the survival rate. The impact itself on survival rate for those which have the PR subtype -- including high risk patients (and here the data is not parsed by high-risk versus low-risk) -- is not good, but the likelihood of that impact is anything but certain.
* BB pointed out that achieving CR early is important, however he also pointed out that when someone has smoldering or indolent MM, or MGUS (which mine could have been for a long time for all we know) it doesn't matter. We must remember my excellent primary care physician hadn't seen me for 18 months. And before that, the only marker he would have been able to look at would be total protein. As my MM was coexisting with my regular immune system (thus permitting normal blood counts), and my albumin was preserved, I could have had a small M-spike for five years without anybody noticing. As SH said in my first meeting with him "we have no idea how long you've had this."
All of this devolves into a statement and a graph. The statement, which I reiterated before, is that I MUST REACH COMPLETE REMISSION. I would like to specifically acknowledge Lori for her very positive comment in my last post, and again I want to thank all of you for reading, writing, and expressing encouragement through comments and emails. I still think the best thing I can bring to this whole process is a positive attitude and any time I feel that flagging, you are always there to provide a bottomless wellspring from which I can replenish it. I really love and appreciate you all.
The graph itself is something I kinda wish I could post here but it is (a) difficult to reproduce, and (b) not yet published in Blood magazine so I don't want to run afoul of BB's work here. Suffice to say, that data runs on TT3 for five years from enrollment now. Remember, if the disease is gone for six years, it's very unlikely to EVER return, without meds, according to BB's data and the history of childhook leukemia total therapy upon which his work is based. So with this in mind, understand:
* Of patients achieving and sustaining remission, 100% are still alive after five years. To put this in contrast, the American Cancer Society published in the last month five year survival statistics of 34%.
* Of patients NOT achieving complete remission, 80% are still alive after five years. That 20% is too high for my liking.
* Patients that achieve and LOSE complete remission (the majority of high-risk patients according to GEP, unfortunately) have only a 50% survival after five years. However, that's still better than 34%.
What is complete remission? What is not complete remission? This brings me to the last observation of what was supposed to be a brief update but which has turned into a monster post.
I'm working from a combination of work from BB and from BD (one of my early consults and the person behind the original staging system for the disease, who was a very nice guy, by the way).
Stringent Complete Remission (sCR) -- CR as defined below plus normal free light chains (I have these), absence of clonal (M-spike) clones in bone marrow under immunofixation and immunofluorescence (I have this, I *THINK* -- not sure if BB uses sCR as a definition as I've only seen it in BD's work)
CR -- No M-spike under immunofixation or serum eletcrophoresis (not there yet), disappearance of any soft tissue plamacytomas (I think I am there) and less than 5% plasma cells in bone marrow (I am 2-3% plasma cells in core bone marrow, so I am there).
nCR -- As CR but with no M-spike under serum electrophoresis (not there yet) but presence under immunofixation.
Very Good Partial Remission -- serum and urine M-protein detectable by immunofixation but not on electrophoresis (not there yet) OR 90% or greater reduction in serum M-protein plus urine M-protein level less than 100mg per 24 hr. I am here now.
Beyond that we get to Partial Response and Progressive Disease, which aren't a large portion of patients, and of course do drag down survival statistics of those unable to achieve CR.
So we know what I need to do. Get rid of that damn M-spike forever. Which is why I've got this bag of four different kinds of mustard gas hooked up to me. And I know it is working, because my taste buds are dying off. I can't taste any subtlety in food, and everything is starting to become metallic. This sucks from a culinary standpoint, but it means rapidly-dividing cells are being killed, and that means myeloma cells are being killed, and that means there will be fewer around to make protein, and the whole shebang should contribute to a very inhospitable environment in my bone marrow for these bastards, so we should consolidate our gains there (hence consolidation treatment, again for the inductive reasoning impaired, or those who hadn't noticed that it had been a couple of post since I used the formal term Consolidation Therapy for this last round).
Almost done here, except for a couple of more BB answers and a funny little quote.
* I had mentioned it's impossible to tell how much of my remission is caused by which phase of my treatment because they are all acting synergistically. Most other protocols wouldn't do the second step of the protocol until the first step is done. But during this intermission, the cancer has time to regroup, even with some modest bridging therapy. BB's approach is always predicated on attacking the cancer relentlessly and staying on top of it until it is gone, gone, gone (hopefully forever). So that's why he doesn't want to take stock mid-protocol. The best way for this not to matter is for me to zero-out the remaining M-protein during this first cycle of consolidation, so that's what we'll shoot for.
* I had mentioned that other doctors would put me on Thal / Dex or Vel / Thal / Dex up front to achieve remission, and then use the transplants to consolidate gains once remission is achieved. BB's protocol is different in two ways: he spends less time in induction up front (although he uses many more drugs), and uses the transplants as active therapy in conjuction with velcade, thal and dex which he believes have synergistic elements with the high-dose melphalan, especially in the "lite" protocol where they have four days to help each other fight the Myeloma. By lingering in induction, it gives the MM cells time to develop drug resistance to Thal / Dex and Velcade. If one is on that cocktail for 6-9 months, that's a long time to develop resistance before relying upon them not just for synergistic benefits during the transplants, but also for bridging and for consolidation treatment.
That should do it except for the quote. It's another glimpse into why I like him so much. When we were at dinner with him and his wife, his wife suggested that we try a place called Jimmy's Serious Sandwiches. I love a good sandwich for lunch but as I'll be neutropenic in a few days, I asked the doctor if it was okay for me to eat. He said (direct quote to reflect his humor, directness and irreverance, with apologies to any offended among you): "Awwww...that stuff is all bullshit. It's bullshit! Half the people who get sick probably get it from following those rules too closely. Eat what you want."
I'm not sure I'll go quite that far -- I've done quite well following the rules -- but it does mean on days when I'm marginal and am really craving a type of food, I will go for it as long as it's not completely filthy.
Okay...that's it, I promise. There you have it, faithful readers. Be well, and more news as it becomes available.
I think the combination of the chemo pump, 25+ pills and the mind-crippling fear of crumbling to a constipated fetal position on the floor must have something to do with it. I am taking both Senna and Docusate. One is a softener, the other a laxative. I will keep with these this time and hope that nothing more exotic needs to be ingested to achieve the desired normalcy.
So...the glimpse of normalcy. When I went to the lab to be connected to the bag for day 1 of 4, and get a host of other things (Velcade injection #1 of 4, PAINFUL Lovenox shot #1 of 6, antinausea agents, etc.), they gave me my labs from yesterday. For the first time since we started looking closely at these things back in February, I was not anemic. I was still at the very low end of the normal range (14-19) on Hemoglobin but I was 14.2. Now, this will be clobbered by the chemo again, but I was asking Dr. SH in Beverly Hills a few weeks ago, when it was 12.2 or so, if it was ever going to be normal again and he said "eventually, once all this chemo stops, it will have a chance to recover." So it ultimately recovered in three more weeks. One of the concerns about BB's program, voiced by KA, was that there is so much marrow-mangling being done that I might not be able to sustain normal counts when it's all said and done. BB of course said this was no problem and that they had never seen it happen, which is what KA said he would say. "But I", added KA, "am a just a quiet little voice on the sidelines whispering 'maybe it might be a problem.'"
KA and BB have a lot of mutual respect for each other and have known each other for a long time, so this was said without any professional jealousy or sniping or anything like that. In fact KA is well aware of the success of the program down here and agreed with my basic logic to pursue it.
ANYHOW...gosh what was supposed to be a quick update is getting long...so my Hemoglobin was more or less normal, and my IgG, IgA and IgM (all immune system markers which are intentionally suppressed by the medication) have returned to normal levels. IgG contains both GOOD immunoglobin from my normally functioning plasma cells as well as tainted immunoglobin from my evil, corrupt Myeloma cells. So we have brought this down from what seems, now, like an impossibly high level of 16000 to around 580, but normal is 700-1400. So getting to 800 on this last lab, particularly with a bone marrow that has no cancer in it, is good. Lastly, RDW, which measures the variability in size of red blood cells and is higher than normal in cancer patients, has almost fallen to normal levels. All good stuff.
Of course this all goes out the window now, since I started taking poison yesterday morning. But it was good to see normalcy in my blood counts for once!
All the markers are good except for two liver markers -- one of which has little-to-no correspondence to alcohol, and one of which does so it could have been elevated somewhat by the previous night's meal with BB and his wife. I had forgotten that I had a gin and tonic with the good doctor after our meal (after all, I don't want to beat cancer only to be taken down with scurvy or malaria). Evidently hematologists during the British Raj didn't look to closely at liver enzymes. At any rate, one of the three booze-related enzymes was elevated (the other two were normal) and this could be a result of the chemo, the velcade, the Fluconazole / anti fungal med, or anything else, really. The other elevated enzyme, LH, is more problematic as that is a surrogate for cancer activity. I don't want to be concerned about any single test, as my liver is still processing dead cancer and getting rid of it through the body and will continue to do so during the consolidation phase, and this aspect of my biology results in a higher LDH. But it is something that I want to keep my eye on. For the budding hematologists in the crowd, it was 280 and really needs to be below 190 to not be an unfavorable indicator of long-term prognosis.
On that topic:
* Things I have going for me according to the statistical analysis: I'm under 65, I had and have preserved Albumin (good blood protein that gets crowded out by evil blood protein when immunoglobins get out of control), low Beta-2 Microglobin (a tumor marker), low CRP (a surrogate for cancer, I found out just yesterday, in addition to general inflammation), low creatinine (meaning good kidney function), low LDH at start of therapy, no severe cytogenic abnormalities (i.e. 4;14 translocation, etc.), low risk defined by Gene Expression Profiling (GEP), and hyperdiploid subtype (this means my cells has too MANY chromosomes, rather than too FEW, which would then be hypodiploid.)
* Things I don't have going for me: only one...in addition to being in the hyperdiploid subtype, I am in the more dangerous proliferation subtype. This means that the cancer is prone to proliferation (there's a shocker to those of you with zero inductive reasoning skills). It grows at a fast rate. This we know both from the visceral predictions of Dr. SH way back when ("the fact that you got this when you're young means your system isn't good at getting rid of it, and I expect it will progress fairly quickly") and it has been borne out by the rapid growth of my protein and M-spike, which went from 8.0 and 4.4 and the time of diagnosis to highs of 12.2 and 8.0 in four months. I of course asked BB about the impact of being in the PR subgroup and he said that being low risk overcomes this. However having studied the statistical model I'm not certain that's true. It does have a very low "P-value" (.001 for those following along with a statistics handbook) which means that the certainty of its impact on survival rate is very low. For example, other factors are typically .15, .35, etc meaning they have a 15% of 35% likelihood of impacting the survival rate. The impact itself on survival rate for those which have the PR subtype -- including high risk patients (and here the data is not parsed by high-risk versus low-risk) -- is not good, but the likelihood of that impact is anything but certain.
* BB pointed out that achieving CR early is important, however he also pointed out that when someone has smoldering or indolent MM, or MGUS (which mine could have been for a long time for all we know) it doesn't matter. We must remember my excellent primary care physician hadn't seen me for 18 months. And before that, the only marker he would have been able to look at would be total protein. As my MM was coexisting with my regular immune system (thus permitting normal blood counts), and my albumin was preserved, I could have had a small M-spike for five years without anybody noticing. As SH said in my first meeting with him "we have no idea how long you've had this."
All of this devolves into a statement and a graph. The statement, which I reiterated before, is that I MUST REACH COMPLETE REMISSION. I would like to specifically acknowledge Lori for her very positive comment in my last post, and again I want to thank all of you for reading, writing, and expressing encouragement through comments and emails. I still think the best thing I can bring to this whole process is a positive attitude and any time I feel that flagging, you are always there to provide a bottomless wellspring from which I can replenish it. I really love and appreciate you all.
The graph itself is something I kinda wish I could post here but it is (a) difficult to reproduce, and (b) not yet published in Blood magazine so I don't want to run afoul of BB's work here. Suffice to say, that data runs on TT3 for five years from enrollment now. Remember, if the disease is gone for six years, it's very unlikely to EVER return, without meds, according to BB's data and the history of childhook leukemia total therapy upon which his work is based. So with this in mind, understand:
* Of patients achieving and sustaining remission, 100% are still alive after five years. To put this in contrast, the American Cancer Society published in the last month five year survival statistics of 34%.
* Of patients NOT achieving complete remission, 80% are still alive after five years. That 20% is too high for my liking.
* Patients that achieve and LOSE complete remission (the majority of high-risk patients according to GEP, unfortunately) have only a 50% survival after five years. However, that's still better than 34%.
What is complete remission? What is not complete remission? This brings me to the last observation of what was supposed to be a brief update but which has turned into a monster post.
I'm working from a combination of work from BB and from BD (one of my early consults and the person behind the original staging system for the disease, who was a very nice guy, by the way).
Stringent Complete Remission (sCR) -- CR as defined below plus normal free light chains (I have these), absence of clonal (M-spike) clones in bone marrow under immunofixation and immunofluorescence (I have this, I *THINK* -- not sure if BB uses sCR as a definition as I've only seen it in BD's work)
CR -- No M-spike under immunofixation or serum eletcrophoresis (not there yet), disappearance of any soft tissue plamacytomas (I think I am there) and less than 5% plasma cells in bone marrow (I am 2-3% plasma cells in core bone marrow, so I am there).
nCR -- As CR but with no M-spike under serum electrophoresis (not there yet) but presence under immunofixation.
Very Good Partial Remission -- serum and urine M-protein detectable by immunofixation but not on electrophoresis (not there yet) OR 90% or greater reduction in serum M-protein plus urine M-protein level less than 100mg per 24 hr. I am here now.
Beyond that we get to Partial Response and Progressive Disease, which aren't a large portion of patients, and of course do drag down survival statistics of those unable to achieve CR.
So we know what I need to do. Get rid of that damn M-spike forever. Which is why I've got this bag of four different kinds of mustard gas hooked up to me. And I know it is working, because my taste buds are dying off. I can't taste any subtlety in food, and everything is starting to become metallic. This sucks from a culinary standpoint, but it means rapidly-dividing cells are being killed, and that means myeloma cells are being killed, and that means there will be fewer around to make protein, and the whole shebang should contribute to a very inhospitable environment in my bone marrow for these bastards, so we should consolidate our gains there (hence consolidation treatment, again for the inductive reasoning impaired, or those who hadn't noticed that it had been a couple of post since I used the formal term Consolidation Therapy for this last round).
Almost done here, except for a couple of more BB answers and a funny little quote.
* I had mentioned it's impossible to tell how much of my remission is caused by which phase of my treatment because they are all acting synergistically. Most other protocols wouldn't do the second step of the protocol until the first step is done. But during this intermission, the cancer has time to regroup, even with some modest bridging therapy. BB's approach is always predicated on attacking the cancer relentlessly and staying on top of it until it is gone, gone, gone (hopefully forever). So that's why he doesn't want to take stock mid-protocol. The best way for this not to matter is for me to zero-out the remaining M-protein during this first cycle of consolidation, so that's what we'll shoot for.
* I had mentioned that other doctors would put me on Thal / Dex or Vel / Thal / Dex up front to achieve remission, and then use the transplants to consolidate gains once remission is achieved. BB's protocol is different in two ways: he spends less time in induction up front (although he uses many more drugs), and uses the transplants as active therapy in conjuction with velcade, thal and dex which he believes have synergistic elements with the high-dose melphalan, especially in the "lite" protocol where they have four days to help each other fight the Myeloma. By lingering in induction, it gives the MM cells time to develop drug resistance to Thal / Dex and Velcade. If one is on that cocktail for 6-9 months, that's a long time to develop resistance before relying upon them not just for synergistic benefits during the transplants, but also for bridging and for consolidation treatment.
That should do it except for the quote. It's another glimpse into why I like him so much. When we were at dinner with him and his wife, his wife suggested that we try a place called Jimmy's Serious Sandwiches. I love a good sandwich for lunch but as I'll be neutropenic in a few days, I asked the doctor if it was okay for me to eat. He said (direct quote to reflect his humor, directness and irreverance, with apologies to any offended among you): "Awwww...that stuff is all bullshit. It's bullshit! Half the people who get sick probably get it from following those rules too closely. Eat what you want."
I'm not sure I'll go quite that far -- I've done quite well following the rules -- but it does mean on days when I'm marginal and am really craving a type of food, I will go for it as long as it's not completely filthy.
Okay...that's it, I promise. There you have it, faithful readers. Be well, and more news as it becomes available.
Monday, July 13, 2009
Mixed news, mostly good, I suppose...
Okay. We spent a LONG time in the clinic today, but ultimately spent a good hour or so with BB and learned some important things. On balance, this was a good checkup, although I am not in CR and we have established that CR is an important goal, not just something that doesn't matter.
1. MY BONE MARROW IS NOW NORMAL. That's the bulk of the good news. There's no abnormality in the marrow any more. Plasma cells, which used to be 70%-80% of the marrow, are now 2-3%. The plasma cells that they examined have no abnormalities, unlike the previous marrow exam on May 19.
2. My M-spike is 0.5 according to the clinic here, which doesn't surprise me too much as it's always higher here than in Los Angeles. However I was at 0.4 when I left, and am now 0.5 despite bridging. BB told me very specifically not to be concerned with this fluctuation. It's a low level of M-protein, there are fluctuations from test to test, the test itself has a margin of error, etc.
3. My PET scan shows no focal lesions, and 100+ areas of involvement still. They are generally unchanged from the last scan, although some are beginning to reduce in size (e.g. one went from 1.6 cm in size to 1.5 cm in size; the largest one went from 3 cm in size to 2.8-2.9 cm in size, etc.)
4. My MRI shows essentially the same level of involvement as last time, on or around May 19th. There is involvement in about sixteen vertebrae, which explains the pain in my back. Nothing is getting any worse, on the margin things may be improving but it's very slow improvement.
5. There are no results back from the Fine Needle Aspiration yet.
6. My uric acid was mildly elevated on the 7/8 lab draw (it was 8.2). The nurse saw this and had me draw more blood today, which wasn't back yet when BB saw me. BB asked her why she bothered. She said "his uric acid was 8.2." BB said "that's because he and I had dinner last night!" For the record, I had two small crabcakes, a 10 oz filet, a small amount of rice, and two glasses of white wine.
I asked BB the questions from the other day. The salient answers are:
* There is no biological difference in attaining CR during transplant versus during consolidation versus during maintenance
* There is a definite connection between achieving CR and positive long-term prognosis. In other words, if I don't achieve CR, I have a lower likelihood of a positive long-term prognosis. This connection is not as strong as the connection between LOSING CR and long-term prognosis. If one achieve CR and then loses it, one is pretty much screwed. This is a real problem with high-risk disease. Sustaining remission in low-risk disease is easier (about 85%-90% of people are able to do so versus more like 20%-30% in high-risk disease). I have low-risk disease, for those who may not recall. I can get more specific in this area but it has to do with hard-core statistics and terms like multivariate Cox regressions, hazard rates and P-tests (the other kind of P-test that doesn't involve a jug).
* I have been in therapy for four and a half months. The MEDIAN point of time to 99% elimination of M-protein among Total Therapy 3 participants with low-risk disease is about six months. That means that at start of therapy plus six months, the 50th person out of 100 in the TT3 population eliminated 99% of M-protein. TT3 is essentially the standard (as opposed to the lite) arm of TT4, in which I am enrolled. In addition to being in the lite arm, I had a quick recovery from my transplants. Thus, I have received both transplants in this period of time, whereas more people in TT3 hadn't received their second transplant at six months. On the margin, this isn't great -- my 4.5 months would translate to something longer than 6 months adjusting for the nature of the treatment. Having said that, the median is just one number among many -- as Stephen Jay Gould said, "the median is not the message." A full understanding of this comment may or may not require knowledge of Mr. Gould but does require familiarity with Marshall McLuhan in order to get the pun. Which isn't really worth the time.
* If one has low-risk disease and one IS going to achieve CR, one will generally do so within 8-12 months from the onset of treatment.
* There is no way to tell how much of what is going on in me is from the transplants versus from consolidation treatment, so it will be too early to see what happens after one cycle of consolidation. BB will assess me after I've gone through consolidation and we will take it from there. He doesn't yet see a reason to be alarmed. He reiterated that for 95% of people there will be no difference in outcome between the lite and standard arms. Obviously, I don't want to be in that 5% but he didn't think there was any reason to be concerned at this point.
I threw in a bonus question about my back, asking how long it would take for the lesions to go away and for the fractures to heal. He said about eight and a half months, and then winked and kicked me in the foot, because that degree of precision is impossible. But it does give me an indication of when I can expect to see full alleviation of the symptoms in my back. Hopefully I can get back to some activity (i.e. golf) long before then. I need to make a mental note to ask him how much activity my back can tolerate.
Well...that's about it. The bottom line is clear: I MUST ACHIEVE COMPLETE REMISSION.
Nothing else is an option.
I still believe I will get there, but it is hard sometimes. What should be spectacularly good news about my bone marrow has been completely trumped by the presence of that M-spike.
I was just starting to come out of my funk when we were watching the show Intervention on A&E. It documents people that are addicted and efforts on the part of their family and friends to get them to stop. Tonight's episode focused on a highly-functioning alcoholic (meaning he was an alcoholic but it didn't affect his ability to do his job, live his life, etc.) and it was very difficult to get him to seek treatment. His two young children had to say they'd never see him again, etc. and they finally forced him.
He was sober for 80 days in treatment when he was diagnosed with advanced esophogeal cancer. He was dead three weeks later. The show ended with his nine year old son crying and saying at least his dad died sober.
This wasn't what I needed to see this evening.
Anyhow...tomorrow I start consolidation. Dex, Thalidomide, Velcade, and 75% of the four nasty chemo agents from induction. I'll be hooked up to that irritating pump that will administer these four agents (Cisplatin, Adriamycin, Cyclophosmomide and Etoposide) over a 24 hour period, and I'll go back in for four days to have it changed. I'll also have daily Lovinox injections to ensure that I don't get blod clots from the thalidomide and dex, and then once I become Neutropenic (hopefully the last time ever in my life) I will get those lovely Neupogen injections again. Plus I'll take supportive meds (Levaquin, Fluconazole, Acyclovir, Protonix and the two anti-constipation agents which I will CERTAINLY take to avoid what happened last time).
One more unto the breach, dear friends.
1. MY BONE MARROW IS NOW NORMAL. That's the bulk of the good news. There's no abnormality in the marrow any more. Plasma cells, which used to be 70%-80% of the marrow, are now 2-3%. The plasma cells that they examined have no abnormalities, unlike the previous marrow exam on May 19.
2. My M-spike is 0.5 according to the clinic here, which doesn't surprise me too much as it's always higher here than in Los Angeles. However I was at 0.4 when I left, and am now 0.5 despite bridging. BB told me very specifically not to be concerned with this fluctuation. It's a low level of M-protein, there are fluctuations from test to test, the test itself has a margin of error, etc.
3. My PET scan shows no focal lesions, and 100+ areas of involvement still. They are generally unchanged from the last scan, although some are beginning to reduce in size (e.g. one went from 1.6 cm in size to 1.5 cm in size; the largest one went from 3 cm in size to 2.8-2.9 cm in size, etc.)
4. My MRI shows essentially the same level of involvement as last time, on or around May 19th. There is involvement in about sixteen vertebrae, which explains the pain in my back. Nothing is getting any worse, on the margin things may be improving but it's very slow improvement.
5. There are no results back from the Fine Needle Aspiration yet.
6. My uric acid was mildly elevated on the 7/8 lab draw (it was 8.2). The nurse saw this and had me draw more blood today, which wasn't back yet when BB saw me. BB asked her why she bothered. She said "his uric acid was 8.2." BB said "that's because he and I had dinner last night!" For the record, I had two small crabcakes, a 10 oz filet, a small amount of rice, and two glasses of white wine.
I asked BB the questions from the other day. The salient answers are:
* There is no biological difference in attaining CR during transplant versus during consolidation versus during maintenance
* There is a definite connection between achieving CR and positive long-term prognosis. In other words, if I don't achieve CR, I have a lower likelihood of a positive long-term prognosis. This connection is not as strong as the connection between LOSING CR and long-term prognosis. If one achieve CR and then loses it, one is pretty much screwed. This is a real problem with high-risk disease. Sustaining remission in low-risk disease is easier (about 85%-90% of people are able to do so versus more like 20%-30% in high-risk disease). I have low-risk disease, for those who may not recall. I can get more specific in this area but it has to do with hard-core statistics and terms like multivariate Cox regressions, hazard rates and P-tests (the other kind of P-test that doesn't involve a jug).
* I have been in therapy for four and a half months. The MEDIAN point of time to 99% elimination of M-protein among Total Therapy 3 participants with low-risk disease is about six months. That means that at start of therapy plus six months, the 50th person out of 100 in the TT3 population eliminated 99% of M-protein. TT3 is essentially the standard (as opposed to the lite) arm of TT4, in which I am enrolled. In addition to being in the lite arm, I had a quick recovery from my transplants. Thus, I have received both transplants in this period of time, whereas more people in TT3 hadn't received their second transplant at six months. On the margin, this isn't great -- my 4.5 months would translate to something longer than 6 months adjusting for the nature of the treatment. Having said that, the median is just one number among many -- as Stephen Jay Gould said, "the median is not the message." A full understanding of this comment may or may not require knowledge of Mr. Gould but does require familiarity with Marshall McLuhan in order to get the pun. Which isn't really worth the time.
* If one has low-risk disease and one IS going to achieve CR, one will generally do so within 8-12 months from the onset of treatment.
* There is no way to tell how much of what is going on in me is from the transplants versus from consolidation treatment, so it will be too early to see what happens after one cycle of consolidation. BB will assess me after I've gone through consolidation and we will take it from there. He doesn't yet see a reason to be alarmed. He reiterated that for 95% of people there will be no difference in outcome between the lite and standard arms. Obviously, I don't want to be in that 5% but he didn't think there was any reason to be concerned at this point.
I threw in a bonus question about my back, asking how long it would take for the lesions to go away and for the fractures to heal. He said about eight and a half months, and then winked and kicked me in the foot, because that degree of precision is impossible. But it does give me an indication of when I can expect to see full alleviation of the symptoms in my back. Hopefully I can get back to some activity (i.e. golf) long before then. I need to make a mental note to ask him how much activity my back can tolerate.
Well...that's about it. The bottom line is clear: I MUST ACHIEVE COMPLETE REMISSION.
Nothing else is an option.
I still believe I will get there, but it is hard sometimes. What should be spectacularly good news about my bone marrow has been completely trumped by the presence of that M-spike.
I was just starting to come out of my funk when we were watching the show Intervention on A&E. It documents people that are addicted and efforts on the part of their family and friends to get them to stop. Tonight's episode focused on a highly-functioning alcoholic (meaning he was an alcoholic but it didn't affect his ability to do his job, live his life, etc.) and it was very difficult to get him to seek treatment. His two young children had to say they'd never see him again, etc. and they finally forced him.
He was sober for 80 days in treatment when he was diagnosed with advanced esophogeal cancer. He was dead three weeks later. The show ended with his nine year old son crying and saying at least his dad died sober.
This wasn't what I needed to see this evening.
Anyhow...tomorrow I start consolidation. Dex, Thalidomide, Velcade, and 75% of the four nasty chemo agents from induction. I'll be hooked up to that irritating pump that will administer these four agents (Cisplatin, Adriamycin, Cyclophosmomide and Etoposide) over a 24 hour period, and I'll go back in for four days to have it changed. I'll also have daily Lovinox injections to ensure that I don't get blod clots from the thalidomide and dex, and then once I become Neutropenic (hopefully the last time ever in my life) I will get those lovely Neupogen injections again. Plus I'll take supportive meds (Levaquin, Fluconazole, Acyclovir, Protonix and the two anti-constipation agents which I will CERTAINLY take to avoid what happened last time).
One more unto the breach, dear friends.
Sunday, July 12, 2009
Weekend visit...
So Jill and I were getting a bit stir crazy around here and we decided to go away for a couple of days to a nearby city...we'll call it Schmemphis to protect those that live there.
We'd been there once before and I actually liked it. I find this curious now, considering I wasn't on any serious drugs at the time. Perhaps the ongoing economic downturn has really taken a toll over the last six months...or perhaps I am now subconsciously aware that Schmemphis is the violent crime capital of the United States...but whatever the reason, I can now charitably describe Schmemphis as an absolute pit.
On a goof, we drove by...uh...Schmaceland just to see what the fuss was about. Every stereotype of the people that make pilgrimages to this place appears to be true -- albeit from the window of a passing car about 100 yards away.
As Jill said, "if that guy hadn't died on a toilet here, there wouldn't even be a city." Hard to argue the point. Although we did have a very nice dinner last night.
Of note, there were many headlines about a decade ago about the West Schmemphis Three, some adolescents accused of a murder. Having driven through West Schmemphis now, I can say without a doubt that they are innocent. Any and all unnatural deaths in West Schmemphis must be the result of suicide given the absolute despair that must set it if one lives there.
Observed on the road between our current digs and Schmemphis: a large (VERY large) billboard saying "USE THE ROD ON YOUR CHILDREN AND SAVE THEIR LIVES!!!!!" with the appropriate Biblical citation beneath it.
That's right, people! Beat your kids senseless and knock 'em straight into heaven!
Jesus is rolling His eyes.
We plan on having dinner this evening with BB and his lovely wife so I will hopefully have something a bit more upbeat to report!
We'd been there once before and I actually liked it. I find this curious now, considering I wasn't on any serious drugs at the time. Perhaps the ongoing economic downturn has really taken a toll over the last six months...or perhaps I am now subconsciously aware that Schmemphis is the violent crime capital of the United States...but whatever the reason, I can now charitably describe Schmemphis as an absolute pit.
On a goof, we drove by...uh...Schmaceland just to see what the fuss was about. Every stereotype of the people that make pilgrimages to this place appears to be true -- albeit from the window of a passing car about 100 yards away.
As Jill said, "if that guy hadn't died on a toilet here, there wouldn't even be a city." Hard to argue the point. Although we did have a very nice dinner last night.
Of note, there were many headlines about a decade ago about the West Schmemphis Three, some adolescents accused of a murder. Having driven through West Schmemphis now, I can say without a doubt that they are innocent. Any and all unnatural deaths in West Schmemphis must be the result of suicide given the absolute despair that must set it if one lives there.
Observed on the road between our current digs and Schmemphis: a large (VERY large) billboard saying "USE THE ROD ON YOUR CHILDREN AND SAVE THEIR LIVES!!!!!" with the appropriate Biblical citation beneath it.
That's right, people! Beat your kids senseless and knock 'em straight into heaven!
Jesus is rolling His eyes.
We plan on having dinner this evening with BB and his lovely wife so I will hopefully have something a bit more upbeat to report!
Friday, July 10, 2009
A chip in the Chinese Wall...and other stories...
So yesterday was the Fine Needle Aspiration of the tumor deep in my right hip, along with ANOTHER bone marrow biopsy (which I had hoped could be done with the same hole but no, of course not, it wound up being in my left hip, which now means my butt is killing me no matter how I try to sit down).
I went to the hospital at 7AM for an 8AM procedure, ready for bear. At the slightest indication that they weren't going to properly anesthetize me, I was going to get up and walk out. I was taken back into pre-op, where I put on a fetching gown opening at the back, and laid down on the gurney. I spoke with the admitting nurse and she indicated that I was going to be given sedation, and I made sure that it was Propofol in addition to Versed, and she said that was the case. So far, so good.
So now, I waited for what seemed likely to be an inevitable and perhaps poetic reunion with Dr. CAH (not his real name or initials), who some readers may recall was thoughtful enough to interject his personal religious observations in a conversation before beginning a surgical procedure on me. The door cracked open and I was ready to greet him with a smile and hope that he'd forgotten the whole incident.
Instead, a very nice young lady came in and after asking me my name, introduced herself as a secretary. She said she had been doing some research...and asked if I wrote a blog.
Gulp.
"Yes, I do write a blog...and come to think of it I had some less than pleasant things to say about Dr. RVH so I'm sorry -- "
Fortunately, she cut me off and said it was no problem, that she enjoyed reading the blog and found it helpful, and that she was reading it on the down-low. All good news. :) If you're reading this right now, HELLO and congratulations again on your engagement!
Anyhow, with that near-scare out of the way, the usual parade of anesthesiologists, nurses and assistants came through, along with the doctor that would be performing the FNA, a nice woman whose name I have forgotten. CAH must have been out sprucing up the billboads between here and Schmemphis. Anyhow, she explained that the PET scan indicated there was no longer a lesion in the hip, and that there were no "hot spots" that she could read -- although the hastened to add that she isn't qualified to read a PET scan. She said there were several "warm spots" but nothing that looked like a full-blown focal lesion. She said the MRI indicated there was still a hole in the bone where the lesion used to be (I wondered to myself if this was from the previous FNA!) so she would still be taking marrow from that area. This seemed fine to me as BB clearly wanted to monitor the change in that one spot.
Obviously, the initial read of the PET scan is a positive, so I'm happy about that.
Anyhow, it all went as it should have. I got wheeled into the CT room, rolled off the comfortable stretcher on to an uncomfortable CT bed on my stomach, and fell asleep. I woke up in the recovery room, fairly groggy but not in much pain. After 30 minutes, we were ready to leave. The nurse offered me the choice of a Vicodin or a Percocet. Vicodin doesn't do anything for me (I'm resistant, I think, to opiates which is why it required the really nasty stuff to cut the pain when I was in the hospital back in March) so I went for the Percocet because I'd never had it before. It was like trying another flavor at Baskin Robbins, I suppose.
Anyhow it worked pretty well. We had lunch at our favorite Mexican place, and then went home to crash for a few hours. We had a pretty nice dinner and then bumped into BB at the restaurant in our condo lobby. He patted my belly a few times (HE's the one that put me on he Dex, dammit!) and gave Jill a hug. He commented that my hair was coming back, which it is -- although as I have remarked to a few people, I am one hockey mask away from being Jason Voorhees.
Anyhow, I asked BB if my hair was going to fall back out and he said "probably not."
That's good, I suppose...except of course it raises the question again of "am I getting enough poison?"
All in all, mixed signals, mostly good, I suppose -- PET scan shows the treatment is working, hair may stay (who cares in the grand scheme of things), hopefully next phase of treatment gets rid of the remaining Myeloma. We shall see.
In any case, the Chinese Wall has a crack in it. I'm counting on the nice secretary in Interventional Radiology to keep this between us! :)
I went to the hospital at 7AM for an 8AM procedure, ready for bear. At the slightest indication that they weren't going to properly anesthetize me, I was going to get up and walk out. I was taken back into pre-op, where I put on a fetching gown opening at the back, and laid down on the gurney. I spoke with the admitting nurse and she indicated that I was going to be given sedation, and I made sure that it was Propofol in addition to Versed, and she said that was the case. So far, so good.
So now, I waited for what seemed likely to be an inevitable and perhaps poetic reunion with Dr. CAH (not his real name or initials), who some readers may recall was thoughtful enough to interject his personal religious observations in a conversation before beginning a surgical procedure on me. The door cracked open and I was ready to greet him with a smile and hope that he'd forgotten the whole incident.
Instead, a very nice young lady came in and after asking me my name, introduced herself as a secretary. She said she had been doing some research...and asked if I wrote a blog.
Gulp.
"Yes, I do write a blog...and come to think of it I had some less than pleasant things to say about Dr. RVH so I'm sorry -- "
Fortunately, she cut me off and said it was no problem, that she enjoyed reading the blog and found it helpful, and that she was reading it on the down-low. All good news. :) If you're reading this right now, HELLO and congratulations again on your engagement!
Anyhow, with that near-scare out of the way, the usual parade of anesthesiologists, nurses and assistants came through, along with the doctor that would be performing the FNA, a nice woman whose name I have forgotten. CAH must have been out sprucing up the billboads between here and Schmemphis. Anyhow, she explained that the PET scan indicated there was no longer a lesion in the hip, and that there were no "hot spots" that she could read -- although the hastened to add that she isn't qualified to read a PET scan. She said there were several "warm spots" but nothing that looked like a full-blown focal lesion. She said the MRI indicated there was still a hole in the bone where the lesion used to be (I wondered to myself if this was from the previous FNA!) so she would still be taking marrow from that area. This seemed fine to me as BB clearly wanted to monitor the change in that one spot.
Obviously, the initial read of the PET scan is a positive, so I'm happy about that.
Anyhow, it all went as it should have. I got wheeled into the CT room, rolled off the comfortable stretcher on to an uncomfortable CT bed on my stomach, and fell asleep. I woke up in the recovery room, fairly groggy but not in much pain. After 30 minutes, we were ready to leave. The nurse offered me the choice of a Vicodin or a Percocet. Vicodin doesn't do anything for me (I'm resistant, I think, to opiates which is why it required the really nasty stuff to cut the pain when I was in the hospital back in March) so I went for the Percocet because I'd never had it before. It was like trying another flavor at Baskin Robbins, I suppose.
Anyhow it worked pretty well. We had lunch at our favorite Mexican place, and then went home to crash for a few hours. We had a pretty nice dinner and then bumped into BB at the restaurant in our condo lobby. He patted my belly a few times (HE's the one that put me on he Dex, dammit!) and gave Jill a hug. He commented that my hair was coming back, which it is -- although as I have remarked to a few people, I am one hockey mask away from being Jason Voorhees.
Anyhow, I asked BB if my hair was going to fall back out and he said "probably not."
That's good, I suppose...except of course it raises the question again of "am I getting enough poison?"
All in all, mixed signals, mostly good, I suppose -- PET scan shows the treatment is working, hair may stay (who cares in the grand scheme of things), hopefully next phase of treatment gets rid of the remaining Myeloma. We shall see.
In any case, the Chinese Wall has a crack in it. I'm counting on the nice secretary in Interventional Radiology to keep this between us! :)
Wednesday, July 8, 2009
Four hours in tubes, a conversation with SF and other stories...
So it was quite a day for tests. We picked up our packet of information at 11, went to get my blood drawn and my dressing changed where they still had my old orders from post-transplant (asking them to do peripheral sticks to run obscure anti-viral cultures that I don't need since I have an immune system again). I explained they didn't need to do that and they eventually go it.
Then we ran over to the MRI, where we waited for 30 minutes and then I was slid into the tube for two full hours. My God is that boring. I popped an Ativan in the vain hope it would let me sleep a bit but it's hard do with the endless BEEP BEEP BEEP BLAM BLAM BLAM CLACK CLACK CLACK going on at 10db past the threshold of pain all around your head. I need to do some research on the sonics of magnetic resonance imaging because I can't understand why the BEEP BEEP BEEP needs to happen. CLACK CLACK CLACK I could rationalize as the magnets being spun around on a track, but BEEP BEEP BEEP?
Anyhow, after we got out of there, we ran off to the clinic for my pre-anesthesia consult. I reiterated that if they don't show up with the right kind of drugs, I am outta there. BB's assistant seemed preoccupied so he didn't say much, but I'm ready for bear if the Faith Healer shows up without the Propofol.
Then it was off to the PET scan. I always love these. Locked in a lead chamber, the woman enters with a lead thermos, says "this won't do anything to you" then removes a syringe from the thermos with tongs, injects it into me, flushes it out with water and runs for the hills, closing the lead door behind her. :)
After stewing in radioactive juices for about 40 minutes, it was back to the PET scan. I think I dozed off a bit on this one -- it's not nearly as noisy.
Jill and I went to get some sushi and now we are tired out, ready to hit the hay. The bone marrow work is being done at 8AM and we need to be there by 7, so it's going to be early to bed and early to rise.
I did speak briefly with Dr. SF this evening. Highlights:
* VTD in induction achieves CR in about 70% of patients, which is better than it used to be.
* He doesn't know that fractionated Melphalan is any less strong than regular Melphalan, so that's probably not the root of the issue.
* He isn't sure if, at this point, CR will be achieved with one round of consolidation, one round plus maintenance, two rounds, two rounds plus maintenance, or maintenenace only. Or, in fact, if it isn't going to be achieved at all, which he agrees would be a disappointment given that I don't want to control the disease but rather to get rid of it.
* He agrees that the right questions for BB are the ones I have outlined.
So...there you have it. More news as it becomes available.
Then we ran over to the MRI, where we waited for 30 minutes and then I was slid into the tube for two full hours. My God is that boring. I popped an Ativan in the vain hope it would let me sleep a bit but it's hard do with the endless BEEP BEEP BEEP BLAM BLAM BLAM CLACK CLACK CLACK going on at 10db past the threshold of pain all around your head. I need to do some research on the sonics of magnetic resonance imaging because I can't understand why the BEEP BEEP BEEP needs to happen. CLACK CLACK CLACK I could rationalize as the magnets being spun around on a track, but BEEP BEEP BEEP?
Anyhow, after we got out of there, we ran off to the clinic for my pre-anesthesia consult. I reiterated that if they don't show up with the right kind of drugs, I am outta there. BB's assistant seemed preoccupied so he didn't say much, but I'm ready for bear if the Faith Healer shows up without the Propofol.
Then it was off to the PET scan. I always love these. Locked in a lead chamber, the woman enters with a lead thermos, says "this won't do anything to you" then removes a syringe from the thermos with tongs, injects it into me, flushes it out with water and runs for the hills, closing the lead door behind her. :)
After stewing in radioactive juices for about 40 minutes, it was back to the PET scan. I think I dozed off a bit on this one -- it's not nearly as noisy.
Jill and I went to get some sushi and now we are tired out, ready to hit the hay. The bone marrow work is being done at 8AM and we need to be there by 7, so it's going to be early to bed and early to rise.
I did speak briefly with Dr. SF this evening. Highlights:
* VTD in induction achieves CR in about 70% of patients, which is better than it used to be.
* He doesn't know that fractionated Melphalan is any less strong than regular Melphalan, so that's probably not the root of the issue.
* He isn't sure if, at this point, CR will be achieved with one round of consolidation, one round plus maintenance, two rounds, two rounds plus maintenance, or maintenenace only. Or, in fact, if it isn't going to be achieved at all, which he agrees would be a disappointment given that I don't want to control the disease but rather to get rid of it.
* He agrees that the right questions for BB are the ones I have outlined.
So...there you have it. More news as it becomes available.
Back in Little Rock with renewed resolve...
I returned to Little Rock yesterday afternoon following four weeks or so in Los Angeles. The culture shock was palpable.
Nonetheless, weather here yesterday was nice (87 degrees, not too humid, sunny) and we are supposedly in for another day or two of that before the dewpoint goes haywire and the heat index takes off. By that time, hopefully, I'll be spending most of my time indoors.
Before reporting on Little Rock, though, I wanted to share some exasperation at trying to get lab results out of SH's office. Mind you, I last had blood drawn there on June 30th -- a week ago. I had called on Monday of this week, so six days after the blood draw, and left a message asking specifically for the M-spike, and saying that if I couldn't be reached on my cell phone, try my home phone, and if you have to leave a message, please just leave the M-spike data.
My cell phone had died by the time the woman called Monday night at 6:30. The message, which I retrieved early Tuesday, said "I'm returning your call. It's 6:30. I'll be here for two more minutes. Otherwise we can talk tomorrow." No mention of the data.
So I called the next day -- yesterday -- and left a detailed message, saying that I was travelling and my phone would likely not be on, but PLEASE leave the M-spike data. I landed in Dallas and checked voicemail as we were waiting for our flight to Little Rock. I had a message. "All your data is normal. Have a good day." I was ready to put my head through the plate glass window of the airport tram. I called back "I NEED, TO TWO SIGNIFICANT DIGITS, THE M-SPIKE DATA TO COMPARE IT WITH PREVIOUS FIGURES OF .27, .29, .32 and .30. PLEASE GIVE ME THE DATA TO THE HUNDREDTH OF A POINT."
FINALLY they called back. 0.32. Now, leaving aside that this ISN'T normal...why did it take so long for them to simply respond to my question? Grrrr....
Anyhow, although I hoped for some 11th hour improvement, the fact remains that I stopped responding to this transplant (or rather, received the full benefit of it) about a week after receiving it. Which brings us to where we are now: heading into consolidation with residual M-spike of 0.3 or thereabouts.
We ran into BB's wife and son at dinner last night -- BB himself is in Ann Arbor for some reason. We will likely all have dinner this weekend once they get their schedule worked out. I explained my concern over my remaining M-protein to BB's wife but what it boils down to is this: I responded to induction, so there's no reason to believe I won't respond to consolidation. I only have a little protein to eradicate. If I need a second cycle to eradicate it, then we'll do a second cycle to eradicate it. And if THAT doesn't do it, then I'll still have maintenance, although BB's wife seemed to agree that it would be better to have it gone before beginning maintenance therapy.
My first round of induction took it the M-spike from 8 to 4. All I need is to get from 0.3 to 0.0. They (well, one of the APNs -- who presided over my first transplant) say it's considered a success if a given round of treatment reduces the M-spike by 50% or more. So 8 to 4 was a success. My first transplant took it from 4 to 0.7 -- a tremendous success. The second transplant from 0.7 to 0.3. At least 50%. So if one cycle of induction takes it to .15, and another takes it to 0.07, that gets pretty close, and that's the least meaningful response I would expect.
I go back to what Dr. EA, a colleague of BB, told me when I was in the hospital: the response of the tumors as shown on the first post-Velcade pet scan was exactly what they hoped to see, and was consistent with a very good long-term prognosis. There's no reason I shouldn't get into remission. I just need to get myself there by hook or crook.
Today I pick up my scheduling packet, get blood drawn (huzzah!) at the infusion center where I can get a full set of labs (and results in less than a week!) and then tonight another PET scan. Tomorrow will be bone marrow and fine needle aspiration from the religious extremist. Unless he's out planning the bombing of a Planned Parenthood clinic somewhere.
More news as it becomes available. And thanks for taking a break from watching the non-stop coverage of Michael Jackson's funeral to check in! :)
Nonetheless, weather here yesterday was nice (87 degrees, not too humid, sunny) and we are supposedly in for another day or two of that before the dewpoint goes haywire and the heat index takes off. By that time, hopefully, I'll be spending most of my time indoors.
Before reporting on Little Rock, though, I wanted to share some exasperation at trying to get lab results out of SH's office. Mind you, I last had blood drawn there on June 30th -- a week ago. I had called on Monday of this week, so six days after the blood draw, and left a message asking specifically for the M-spike, and saying that if I couldn't be reached on my cell phone, try my home phone, and if you have to leave a message, please just leave the M-spike data.
My cell phone had died by the time the woman called Monday night at 6:30. The message, which I retrieved early Tuesday, said "I'm returning your call. It's 6:30. I'll be here for two more minutes. Otherwise we can talk tomorrow." No mention of the data.
So I called the next day -- yesterday -- and left a detailed message, saying that I was travelling and my phone would likely not be on, but PLEASE leave the M-spike data. I landed in Dallas and checked voicemail as we were waiting for our flight to Little Rock. I had a message. "All your data is normal. Have a good day." I was ready to put my head through the plate glass window of the airport tram. I called back "I NEED, TO TWO SIGNIFICANT DIGITS, THE M-SPIKE DATA TO COMPARE IT WITH PREVIOUS FIGURES OF .27, .29, .32 and .30. PLEASE GIVE ME THE DATA TO THE HUNDREDTH OF A POINT."
FINALLY they called back. 0.32. Now, leaving aside that this ISN'T normal...why did it take so long for them to simply respond to my question? Grrrr....
Anyhow, although I hoped for some 11th hour improvement, the fact remains that I stopped responding to this transplant (or rather, received the full benefit of it) about a week after receiving it. Which brings us to where we are now: heading into consolidation with residual M-spike of 0.3 or thereabouts.
We ran into BB's wife and son at dinner last night -- BB himself is in Ann Arbor for some reason. We will likely all have dinner this weekend once they get their schedule worked out. I explained my concern over my remaining M-protein to BB's wife but what it boils down to is this: I responded to induction, so there's no reason to believe I won't respond to consolidation. I only have a little protein to eradicate. If I need a second cycle to eradicate it, then we'll do a second cycle to eradicate it. And if THAT doesn't do it, then I'll still have maintenance, although BB's wife seemed to agree that it would be better to have it gone before beginning maintenance therapy.
My first round of induction took it the M-spike from 8 to 4. All I need is to get from 0.3 to 0.0. They (well, one of the APNs -- who presided over my first transplant) say it's considered a success if a given round of treatment reduces the M-spike by 50% or more. So 8 to 4 was a success. My first transplant took it from 4 to 0.7 -- a tremendous success. The second transplant from 0.7 to 0.3. At least 50%. So if one cycle of induction takes it to .15, and another takes it to 0.07, that gets pretty close, and that's the least meaningful response I would expect.
I go back to what Dr. EA, a colleague of BB, told me when I was in the hospital: the response of the tumors as shown on the first post-Velcade pet scan was exactly what they hoped to see, and was consistent with a very good long-term prognosis. There's no reason I shouldn't get into remission. I just need to get myself there by hook or crook.
Today I pick up my scheduling packet, get blood drawn (huzzah!) at the infusion center where I can get a full set of labs (and results in less than a week!) and then tonight another PET scan. Tomorrow will be bone marrow and fine needle aspiration from the religious extremist. Unless he's out planning the bombing of a Planned Parenthood clinic somewhere.
More news as it becomes available. And thanks for taking a break from watching the non-stop coverage of Michael Jackson's funeral to check in! :)
Subscribe to:
Posts (Atom)
