Boy do I hate that overused phrased. Not "opinions wanted" or course but the ridiculous "taking it to the next level" which is so overused and yet apropos here so I find myself forced to use it.
I have come to adore all of you, my friends and family and acquaintances and fellow MM sufferers / warriors / wanderers depending on your disposition and preference. :) And I love the little community that we have here.
At the same time, I have come to realize from a variety of sources that my experiences in going through diagnosis and treatment, and my honesty in recounting it without regard to my dignity (though thankfully there's been a little less of those awful experiences lately!) and my particular attitude towards fighting the disease, plus the time that I had to research my options and learn about the disease, all contribute to making this blog something that can be very helpful to newly diagnosed patients, as well as patients going through the treatments, and their caregivers.
Wow, what a tortuously long sentence.
I found some of the books I bought on Myeloma left a little to be desired when I was diagnosed, and if nothing else, my voice is certainly different from the books I read on the subject. I wrote in here a couple of times during treatment that one book I read said that "life will never be the same" and "you will measure your birthday from the date of your transplant" etc. etc. and how this seems incredibly defeatist to me. I am not trying to take anything away from the experience of that person -- everyone's disease and everyone's approach to it is different -- but I would have been helped, I think, by a different voice. And I hope that my blog can contribute to such a voice.
So my question for you fine folks is about format. Here's what I was thinking:
* I think the honesty of my blog is of paramount importance. There are times, for example, when I was on dilaudid and my thoughts were probably incomprehensible and filled with spelling mistakes. I don't want to edit these out.
* I think the gradual reveal and increase in knowledge in the blog is important. There are times when I didn't know as much and the comments or questions I posted here reflected some of that lack of knowledge -- whether it be misspelling (or misremembering) one of my medications, or not understanding some aspect of the disease or treatment. I don't want to edit these out.
The solution, I think, is to have each blog entry, and then beneath that an italicized update / errata correction / other notes to put the entry into a more full context as needed. I'd like your thoughts on this, hence the poll on the page.
Secondarily, your comments and positive urging along the way are a critical piece of this blog. When the time comes, if it does come to being published, I'll ask you individually (to the extent I am able to reach you) if it's okay to include your comments. I will almost certainly exclude names from them, however. For a preliminary indication of your thoughts on this, another poll is featured.
Thirdly, I have used initials for all medical personnel throughout, and I wanted to preserve anonymity in case I had something less than flattering to say about one or more of them. There is one doctor who I had a bad consult with, for example. And another whose opinions I think are dangerous. And these opinions might not be something I want to publish. On the other hand, the majority of doctors are fantastic, and anybody with Google and a modicum of interest has certainly already determined who BB is. Moreover, I believe many of the doctors herein saved my life, and I want to call them out by name (certainly BB, and several others).
So I'd also like your thoughts on how I might effectively use the full names where appropriate.
Thanks very much for your thoughts on these burnings issues!!! :)
P.S. Mandatory clinical update: 20mg of dex was enough to keep me up until 3AM. Next time I must take Ambien on "dex days." I will also be adding two supplements for general health and to ensure no neuropathy from the Velcade -- the Alpha Lipoic Acid in the morning, and the MetNx at night (as the latter can cause drowsiness). I might try to get some Vitamin D in there at some point although I don't want to boost the immune system too much since the goal of all these meds is to keep it somewhat suppressed.
Wednesday, September 30, 2009
Tuesday, September 29, 2009
Down the hatch, and other stories!
So things went reasonably well at the City of Hope today, surprisingly enough!
I woke up this morning and popped 20mg of dex, along with Acyclovir (400mg), Tamiflu (75mg), Pantoprazole (the heartburn is acting up) and 10mg of Lipitor. Funny...I remember going on the Lipitor several years ago and lamenting the fact that I would have to be on medication for the rest of my life. How little did I know...
We went to City of Hope and after checking in, we went to the surgery consult. I had the person at check in, the nurse that checked my blood pressure and admitted me to the surgery consult, and the physician's assistant who looked at me ALL say "so, you're here for a Hickman removal?" And I explained to each that I'd had numerous conversations to try to set them straight there, but every time, the administration at CoH screwed it up. I don't have a Hickman, and it's not a removal.
Once we got over that frustrating little barrier, the PA was actually very helpful. He explained that the portacath was placed higher in my chest than they would do, and that it might be sitting on nerve ganglia, and that it's very rare to experience this type of pain. We talked about several options, including keeping it, removing it, or replacing it with a Pik-line (which would be similar to what I had...no thanks, I like taking a shower like a normal person and not having to worry about changing the thing out every couple of months). His ultimate point of view was that it's only been two months post-op, and we should check again in a month and then decide what to do.
From there, we went to get labs drawn. After a little mixup (of course they didn't have down that I had a portacath and sent us to the wrong lab) we went to City of Hope's version of the infusion center. The nurse who helped me was a WONDERFULLY warm person who informed me that her husband's friend was just diagnosed with MM. I get her the history of my research and treatment, and mentioned this blog to her, and offered my perspective and help.
She did a very good job of accessing my port -- which is to say it only hurt a bit more than a regular IV placement, not horribly. She didn't touch the painful line -- I'll have that done next week at GD's office. She said that the placement was deeper than usual. That might have something to do with the pain, which she said was an issue in maybe only one in a hundred portacaths in her experience. She left the IV in, and we went to check in with Dr. SF.
It was now a little after 1PM, and they checked us in, and THEN said that the appointment wasn't until 4:30. So we went to lunch, came back, and killed 45 minutes by reading my charts, including the labwork that had been done earlier that day.
Long story short: the lab numbers all look great. All my counts are normal, although platelets at 160 are on the low end of normal. But Hemoglobin has come roaring back and is now at 14.5, which explains why my energy level has been improving. White counts are normal. Electrolytes are normal. Total protein is normal at 7.5 and Albumin is roaring back to 4.6, so globulin is a very nice 2.9 figure -- considering this number was around 10 at one point, with over 8 from monoclonal protein, it's great to see it in a healthy range.
Then we met with SF, and I am reminded once again of what a wonderful, warm, compassionate, funny and extremely intelligent doctor he is. I told him I feel like I have the "dream team" of physicians on this project. Some highlights:
* He looked at the maintenance instructions from BB and, smiling, shook his head. "Typical BB." Was his response. It's powerful stuff, definitely. But he is on board for it.
* He agrees that reimmunization isn't necessary, although at some point we'll run a test to confirm that I have residual antibodies present in my blood for all my childhood diseases. He suspects that I have rebuilt my immunity to Varicella (Shingles) and that I hopefully will not have another episode of those, which is a good thing. He is not as sold on the prophylactic value of daily Tamiflu -- in fact he was quite skeptical -- but I'm sticking with the program as it helped me get rid of a burgeoning cold last week. He said he thought it would be okay for me to get a dead flu vaccine -- we'll see about that. I'll probably wait a couple of years until the immune system is working fine again. He wasn't quite as sure about travelling to India or other exotic locales where the "herd immunity" is fundamentally different from the immunity of those around me in the US or similarly innoculated societies.
* The heartburn which I now have is a result of the Dex, and that explains why Pantoprazole is needed. Hopefully I can discontinue it at some distant time in the future.
* The enlarged prostate may or may not be a result of the Melphalan but in any case it has no connection to increased likelihood of prostate cancer. I can have PSAs run but they are mostly useful to set as a baseline.
* The portacath should not hurt like this and it should come out. He recommended putting one on the other side. He said that if I was even CONTEMPLATING taking something like Dilaudid before having it accessed, it was crazy to keep it in, and felt that two months post-op was MORE than enough time for the discomfort to have stopped. I'm going to see how bad the access is next Tuesday before I make a decision on that one.
After our consult, I got my Velcade and we went home without further event. I gulped down my first of about 800 Revlimid pills tonight. Yum!
And soon, it's off to sleep, right after I have a baby aspirin to ward off any potential bloodclots from the Rev/Dex combo. I will dutifully report any side effects from maintenance, and will certainly be back as next Tuesday draws near, if nothing merits an update before then.
But soon, however, I will have a poll for all of you, or a questionnaire at least. Stay tuned for that gripping development! :)
Best to you and yours,
Nick
I woke up this morning and popped 20mg of dex, along with Acyclovir (400mg), Tamiflu (75mg), Pantoprazole (the heartburn is acting up) and 10mg of Lipitor. Funny...I remember going on the Lipitor several years ago and lamenting the fact that I would have to be on medication for the rest of my life. How little did I know...
We went to City of Hope and after checking in, we went to the surgery consult. I had the person at check in, the nurse that checked my blood pressure and admitted me to the surgery consult, and the physician's assistant who looked at me ALL say "so, you're here for a Hickman removal?" And I explained to each that I'd had numerous conversations to try to set them straight there, but every time, the administration at CoH screwed it up. I don't have a Hickman, and it's not a removal.
Once we got over that frustrating little barrier, the PA was actually very helpful. He explained that the portacath was placed higher in my chest than they would do, and that it might be sitting on nerve ganglia, and that it's very rare to experience this type of pain. We talked about several options, including keeping it, removing it, or replacing it with a Pik-line (which would be similar to what I had...no thanks, I like taking a shower like a normal person and not having to worry about changing the thing out every couple of months). His ultimate point of view was that it's only been two months post-op, and we should check again in a month and then decide what to do.
From there, we went to get labs drawn. After a little mixup (of course they didn't have down that I had a portacath and sent us to the wrong lab) we went to City of Hope's version of the infusion center. The nurse who helped me was a WONDERFULLY warm person who informed me that her husband's friend was just diagnosed with MM. I get her the history of my research and treatment, and mentioned this blog to her, and offered my perspective and help.
She did a very good job of accessing my port -- which is to say it only hurt a bit more than a regular IV placement, not horribly. She didn't touch the painful line -- I'll have that done next week at GD's office. She said that the placement was deeper than usual. That might have something to do with the pain, which she said was an issue in maybe only one in a hundred portacaths in her experience. She left the IV in, and we went to check in with Dr. SF.
It was now a little after 1PM, and they checked us in, and THEN said that the appointment wasn't until 4:30. So we went to lunch, came back, and killed 45 minutes by reading my charts, including the labwork that had been done earlier that day.
Long story short: the lab numbers all look great. All my counts are normal, although platelets at 160 are on the low end of normal. But Hemoglobin has come roaring back and is now at 14.5, which explains why my energy level has been improving. White counts are normal. Electrolytes are normal. Total protein is normal at 7.5 and Albumin is roaring back to 4.6, so globulin is a very nice 2.9 figure -- considering this number was around 10 at one point, with over 8 from monoclonal protein, it's great to see it in a healthy range.
Then we met with SF, and I am reminded once again of what a wonderful, warm, compassionate, funny and extremely intelligent doctor he is. I told him I feel like I have the "dream team" of physicians on this project. Some highlights:
* He looked at the maintenance instructions from BB and, smiling, shook his head. "Typical BB." Was his response. It's powerful stuff, definitely. But he is on board for it.
* He agrees that reimmunization isn't necessary, although at some point we'll run a test to confirm that I have residual antibodies present in my blood for all my childhood diseases. He suspects that I have rebuilt my immunity to Varicella (Shingles) and that I hopefully will not have another episode of those, which is a good thing. He is not as sold on the prophylactic value of daily Tamiflu -- in fact he was quite skeptical -- but I'm sticking with the program as it helped me get rid of a burgeoning cold last week. He said he thought it would be okay for me to get a dead flu vaccine -- we'll see about that. I'll probably wait a couple of years until the immune system is working fine again. He wasn't quite as sure about travelling to India or other exotic locales where the "herd immunity" is fundamentally different from the immunity of those around me in the US or similarly innoculated societies.
* The heartburn which I now have is a result of the Dex, and that explains why Pantoprazole is needed. Hopefully I can discontinue it at some distant time in the future.
* The enlarged prostate may or may not be a result of the Melphalan but in any case it has no connection to increased likelihood of prostate cancer. I can have PSAs run but they are mostly useful to set as a baseline.
* The portacath should not hurt like this and it should come out. He recommended putting one on the other side. He said that if I was even CONTEMPLATING taking something like Dilaudid before having it accessed, it was crazy to keep it in, and felt that two months post-op was MORE than enough time for the discomfort to have stopped. I'm going to see how bad the access is next Tuesday before I make a decision on that one.
After our consult, I got my Velcade and we went home without further event. I gulped down my first of about 800 Revlimid pills tonight. Yum!
And soon, it's off to sleep, right after I have a baby aspirin to ward off any potential bloodclots from the Rev/Dex combo. I will dutifully report any side effects from maintenance, and will certainly be back as next Tuesday draws near, if nothing merits an update before then.
But soon, however, I will have a poll for all of you, or a questionnaire at least. Stay tuned for that gripping development! :)
Best to you and yours,
Nick
Monday, September 28, 2009
Reflections on the Eve of Maintenance
So the blissful eight weeks without cancer therapy ends tomorrow. It's another moment for reflection on the path I've chosen. A year ago, when I began this journey, few other doctors believed in maintenance therapy. Now, more are getting on the bandwagon, as they believe it's critical to keeping the cancer away for a longer period of time. But only BB and his team (with the possible exception of his disciple in Utah) believe in maintenance therapy of the type he is prescribing as part of an active plan to kill the disease once and for all.
I'll be on Velcade every Tuesday, Revlimid for 21 days out of every 28, 20 mg of dex on every Tuesday, and then once a month Zometa and Testosterone, but those aren't as big a deal.
When I explained this maintenance regimen to Kathy of the MMRF, she noted that it is all semantics but this is aggressive therapy. And indeed that is true. For most doctors, this is probably more or less the cocktail that they would use to get rid of disease that is running rampant -- with a few changes in the cadence, perhaps. But for me, in a body that has such low levels of the disease that they are not detectable by the most sensitive tests done, I'll take this cocktail for the next three years with the hope of killing every last rogue cancer cell.
It's both daunting and trivial compared with what I've been through -- but I have something of a sense of dread nonetheless. Some of this comes from that damn portacath, which hurts, still. I don't even want them using it tomorrow, flushing the line, anything -- I just want it out of me, once I talk with people that access them all the time and who can tell me if this was placed too deep, or incorrectly, or try to describe why it hurts so bloody much.
It's also daunting because of the long list of side effects that these medications can cause. And yet, the biggest side effect of not taking them is death -- and that's a pretty bad side effect experienced by the majority of people that are not on these medications. So on them I shall be.
Absent a large pile of nickels for dramatic effect, want to see what $325 looks like?
On the left, is a bottle of Salon champagne, one of the most rarified and expensive Champagnes in the world (Dom Perignon is nothing next to this stuff). It's from 1996, which is one of the best modern years of Champagne. It is the type of thing that one drinks to celebrate being cured of cancer -- if one has a bottle of it, one is very lucky and it's unlikely I'll ever have too many more in my life.
On the right, is a single 15 mg pill of Revlimid. Much less enjoyable than the Salon, with side effects that are much more dire than simply the warm feeling and love-of-all-mankind that is typically brought about by a few of glasses of wine. And I must swallow 21 of these pills a month for the next three years.
The same amount of money. One consumed for enjoyment and celebration if one is very lucky, maybe once or twice in one's lifetime. And the other taken more days than not for the next three years to ensure that one is alive to enjoy the Champagne. A perversely symbiotic relationship, it seems.
Something is wrong with this picture. But in contrast to where you think I'm going with this, what is wrong with the picture is not that Celgene is making a lot of money off that pill. In a few years, it will be generic and nowhere near as expensive. In the meantime, Celgene needs to earn a profit on the research it invested in this pill, which will save my life. I have to take the lousy pill to make sure I'm around to enjoy the Champagne -- and the pills are making up altogether too much of my future, while the Champagne will have to wait until I am six years out on BB's curve, and thus cured. Fortunately, it's ageworthy.
I guess my point is, I wish life was more about Champagne and less about pills. But on the other hand, a lot of this is about state of mind, and every day that includes pill-taking is still a gift of another day. So thank God (and Celgene, particularly if you are a scientific atheist) for that little marvelous pill nonetheless! And thank God, regardless of whatever flaws exist in our healthcare system here, that my insurance covers Revlimid for newly diagnosed patients. I will not politicize this blog, but I will point out that NHS in the UK does not permit Revlimid in newly diagnosed patients. Likewise, there is a very good man who reads this blog in New Zealand, and he has been through several years of hell with his Myeloma, which has battled back despite being put into remission from previous treatment. This man deserves Revlimid, and Pomalidomide if needed, and Velcade, so that his disease can be shut down again. And it's not that easy. As I understand it, Velcade isn't covered.
This disease is hard enough to contend with without having to worry about access to treatment -- and so my prayer and positive thought for the day is that all people suffering from this disease, regardless of where they live or what type of healthcare system they live in, have access to treatments that will relieve their suffering and restore their health.
As for me...I'm glad to take that pill, and I'll be even more glad to drink that Champagne when the time comes. But for tomorrow, I am trying to steel myself for what I anticipate to be a series of administrative blunders and ineptitude, interrupted by what will be, I am sure, a great meeting with Dr. SF. More to come after that!
I'll be on Velcade every Tuesday, Revlimid for 21 days out of every 28, 20 mg of dex on every Tuesday, and then once a month Zometa and Testosterone, but those aren't as big a deal.
When I explained this maintenance regimen to Kathy of the MMRF, she noted that it is all semantics but this is aggressive therapy. And indeed that is true. For most doctors, this is probably more or less the cocktail that they would use to get rid of disease that is running rampant -- with a few changes in the cadence, perhaps. But for me, in a body that has such low levels of the disease that they are not detectable by the most sensitive tests done, I'll take this cocktail for the next three years with the hope of killing every last rogue cancer cell.
It's both daunting and trivial compared with what I've been through -- but I have something of a sense of dread nonetheless. Some of this comes from that damn portacath, which hurts, still. I don't even want them using it tomorrow, flushing the line, anything -- I just want it out of me, once I talk with people that access them all the time and who can tell me if this was placed too deep, or incorrectly, or try to describe why it hurts so bloody much.
It's also daunting because of the long list of side effects that these medications can cause. And yet, the biggest side effect of not taking them is death -- and that's a pretty bad side effect experienced by the majority of people that are not on these medications. So on them I shall be.
Absent a large pile of nickels for dramatic effect, want to see what $325 looks like?
On the left, is a bottle of Salon champagne, one of the most rarified and expensive Champagnes in the world (Dom Perignon is nothing next to this stuff). It's from 1996, which is one of the best modern years of Champagne. It is the type of thing that one drinks to celebrate being cured of cancer -- if one has a bottle of it, one is very lucky and it's unlikely I'll ever have too many more in my life.
On the right, is a single 15 mg pill of Revlimid. Much less enjoyable than the Salon, with side effects that are much more dire than simply the warm feeling and love-of-all-mankind that is typically brought about by a few of glasses of wine. And I must swallow 21 of these pills a month for the next three years.
The same amount of money. One consumed for enjoyment and celebration if one is very lucky, maybe once or twice in one's lifetime. And the other taken more days than not for the next three years to ensure that one is alive to enjoy the Champagne. A perversely symbiotic relationship, it seems.
Something is wrong with this picture. But in contrast to where you think I'm going with this, what is wrong with the picture is not that Celgene is making a lot of money off that pill. In a few years, it will be generic and nowhere near as expensive. In the meantime, Celgene needs to earn a profit on the research it invested in this pill, which will save my life. I have to take the lousy pill to make sure I'm around to enjoy the Champagne -- and the pills are making up altogether too much of my future, while the Champagne will have to wait until I am six years out on BB's curve, and thus cured. Fortunately, it's ageworthy.
I guess my point is, I wish life was more about Champagne and less about pills. But on the other hand, a lot of this is about state of mind, and every day that includes pill-taking is still a gift of another day. So thank God (and Celgene, particularly if you are a scientific atheist) for that little marvelous pill nonetheless! And thank God, regardless of whatever flaws exist in our healthcare system here, that my insurance covers Revlimid for newly diagnosed patients. I will not politicize this blog, but I will point out that NHS in the UK does not permit Revlimid in newly diagnosed patients. Likewise, there is a very good man who reads this blog in New Zealand, and he has been through several years of hell with his Myeloma, which has battled back despite being put into remission from previous treatment. This man deserves Revlimid, and Pomalidomide if needed, and Velcade, so that his disease can be shut down again. And it's not that easy. As I understand it, Velcade isn't covered.
This disease is hard enough to contend with without having to worry about access to treatment -- and so my prayer and positive thought for the day is that all people suffering from this disease, regardless of where they live or what type of healthcare system they live in, have access to treatments that will relieve their suffering and restore their health.
As for me...I'm glad to take that pill, and I'll be even more glad to drink that Champagne when the time comes. But for tomorrow, I am trying to steel myself for what I anticipate to be a series of administrative blunders and ineptitude, interrupted by what will be, I am sure, a great meeting with Dr. SF. More to come after that!
Thursday, September 24, 2009
It's me noggin, not me peepers
Just back from the opthamologist (dr. DA, who is awesome, not that it will do any of you any good since I'm only listing initials -- if you live in Southern California and need a good opthamologist, email me!). I have no cataracts or anything physiologicallyl wrong with my eyes. My vision is still 20/20 -- which means it was probably BETTER than 20/20 before treatment since I have definitely lost some crispness.
My eyes are dilated so I can't really see what I am typing...thus I'll make this a short note.
I do want to mention that in my appreciation for Kathy Giusti and the MMRF, I don't want to discount the many, many people who have assisted in fundraising on the grassroots level. My point yesterday was that this t type of fundraising was not what they have in mind when considering a person for their board -- at that point it is about (very) large donations.
In any case, a great many people are contributing towards advancing treatment for this disease and as a patient, I am appreciative of everybody's efforts!
My eyes are dilated so I can't really see what I am typing...thus I'll make this a short note.
I do want to mention that in my appreciation for Kathy Giusti and the MMRF, I don't want to discount the many, many people who have assisted in fundraising on the grassroots level. My point yesterday was that this t type of fundraising was not what they have in mind when considering a person for their board -- at that point it is about (very) large donations.
In any case, a great many people are contributing towards advancing treatment for this disease and as a patient, I am appreciative of everybody's efforts!
Wednesday, September 23, 2009
Rule Brittania, City of Dopes Redux and My Breakfast with Kathy
Morning folks.
I think I had mentioned that BB nonchalantly suggested I lose a large amount of weight which, upon further consultation and showing him the size of my calves, was "dose reduced" so to speak to around 15 pounds. I'm energized to do so.
While I was in Little Rock over the summer, my intrepid two-year-old son somehow managed to adjust our digital scale so that it reads out in stone. That's right, stone. I actually think this is so funny that I'm not going to try to change it back. I currently weight 13 stone 3, and my goal is 12 stone! Hahaha!! I love saying that. All British measurements are fantastic. I seem to recall that the "foot" came from the literal size of a certain ruler's foot. I wonder if Henry VIII had an enormous kidney stone? :) Or perhaps some less hefty king was able to lift a rock weighing precisely fourteen pounds and smart advisors noted that this was the most one person could possibly lift and thus it became the proper unit of measurement.
I am at a bit of a lull in between therapeutic measures right now. I'm just taking acyclovir and tamiflu on a prohylactic basis. My energy level is beginning to improve as red counts increase. I spoke with my primary care doctor PZ and in light of the arterial damage and enlarged prostate courtesy of the chemo, he wants me back on Lipitor immediately, and to order regular PSA tests along with the rest of my bloodwork. So I'll start to incorporate those.
I had a lovely and lengthy breakfast meeting this morning with Kathy Giusti of the MMRF. I've written about her before, but the influence this woman has had on the future of Myeloma cannot really be overstated. In fact, other than doctors performing the research, I have a hard time imagining any one person being more important towards developing a cure that involves a bit less than what I've been through. We patients have her and her organization to thank for the rapid development of carfilzomib (next generation Velcade) and pomalidomide (next generation Revlimid) which will be the drugs that I may need to fall on if all of this current treatment fails.
I met with Kathy to thank her for her early counsel and also to ask, rather directly, how I might join the board of the MMRF. This is, I gather, not the first time she's had such a request. I do think I bring an interesting combination of skill and perspective to such a situation. That said, they don't really lose board members, and membership is a "give/get" situation -- meaning board members must either donate sizable amounts of money for the privilege of sitting on the board, or must raise money from other sources for same. I don't particularly like flogging people for money so this isn't in my sweetspot, exactly.
Having said that, we also discussed a potential venture capital model for spurring ongoing research and I think I brought a few good ideas to that conversation. I will likely be helping the MMRF to flesh out these concepts a bit, and potentially working with the head of their west coast operations, perhaps on a regional board or something along those lines. Whatever the case, it's a start in my efforts to direct some of my energy back towards helping find a clear cure for this disease.
Lastly, the administrative frustrations with City of Hope continue. I am scheduled to begin my maintenance therapy with GD on 9/29. I was also scheduled for a CONSULT ON MY PORTACATH (the reason for my frustrated all caps will be explained shortly) at City of Hope on 9/29, and to see Dr. SF while there. The consult was to be at 11AM, the appointment at 1:30.
Normally, I will see GD in the afternoon, but when I went to change this one appointment to the morning, I wasn't able to -- evidently 9/28 is a Jewish holiday and that means 9/29 is packed solid.
No problem, or so I thought. After all, I can get my Velcade at City of Hope.
Long story short, four phone calls later, they still think I have a Hickman Catheter (not the same time as a port). They still think the 11AM consult is actually a removal. They will draw labs, allegedly, but they won't be able to dispense Velcade until after the results have been reviewed by SF. And the appointment with SF isn't until 4:30PM now. So the best I can hope for is they'll have to stick me twice, which is an issue given how damn painful this stupid portacath is. They STILL don't understand what I have in my chest (a Hickman is what I had in little rock and it can be removed in about ten seconds; mine is surgically embedded under my skin and is a totally different animal -- it has to be removed under anaesthesia).
I'm not holding out hope for much other than extreme frustration out there -- probably accompanied by more people thinking that I need blood pressure meds as a result of dealing with their own incompetence. Grrrr....
I think I had mentioned that BB nonchalantly suggested I lose a large amount of weight which, upon further consultation and showing him the size of my calves, was "dose reduced" so to speak to around 15 pounds. I'm energized to do so.
While I was in Little Rock over the summer, my intrepid two-year-old son somehow managed to adjust our digital scale so that it reads out in stone. That's right, stone. I actually think this is so funny that I'm not going to try to change it back. I currently weight 13 stone 3, and my goal is 12 stone! Hahaha!! I love saying that. All British measurements are fantastic. I seem to recall that the "foot" came from the literal size of a certain ruler's foot. I wonder if Henry VIII had an enormous kidney stone? :) Or perhaps some less hefty king was able to lift a rock weighing precisely fourteen pounds and smart advisors noted that this was the most one person could possibly lift and thus it became the proper unit of measurement.
I am at a bit of a lull in between therapeutic measures right now. I'm just taking acyclovir and tamiflu on a prohylactic basis. My energy level is beginning to improve as red counts increase. I spoke with my primary care doctor PZ and in light of the arterial damage and enlarged prostate courtesy of the chemo, he wants me back on Lipitor immediately, and to order regular PSA tests along with the rest of my bloodwork. So I'll start to incorporate those.
I had a lovely and lengthy breakfast meeting this morning with Kathy Giusti of the MMRF. I've written about her before, but the influence this woman has had on the future of Myeloma cannot really be overstated. In fact, other than doctors performing the research, I have a hard time imagining any one person being more important towards developing a cure that involves a bit less than what I've been through. We patients have her and her organization to thank for the rapid development of carfilzomib (next generation Velcade) and pomalidomide (next generation Revlimid) which will be the drugs that I may need to fall on if all of this current treatment fails.
I met with Kathy to thank her for her early counsel and also to ask, rather directly, how I might join the board of the MMRF. This is, I gather, not the first time she's had such a request. I do think I bring an interesting combination of skill and perspective to such a situation. That said, they don't really lose board members, and membership is a "give/get" situation -- meaning board members must either donate sizable amounts of money for the privilege of sitting on the board, or must raise money from other sources for same. I don't particularly like flogging people for money so this isn't in my sweetspot, exactly.
Having said that, we also discussed a potential venture capital model for spurring ongoing research and I think I brought a few good ideas to that conversation. I will likely be helping the MMRF to flesh out these concepts a bit, and potentially working with the head of their west coast operations, perhaps on a regional board or something along those lines. Whatever the case, it's a start in my efforts to direct some of my energy back towards helping find a clear cure for this disease.
Lastly, the administrative frustrations with City of Hope continue. I am scheduled to begin my maintenance therapy with GD on 9/29. I was also scheduled for a CONSULT ON MY PORTACATH (the reason for my frustrated all caps will be explained shortly) at City of Hope on 9/29, and to see Dr. SF while there. The consult was to be at 11AM, the appointment at 1:30.
Normally, I will see GD in the afternoon, but when I went to change this one appointment to the morning, I wasn't able to -- evidently 9/28 is a Jewish holiday and that means 9/29 is packed solid.
No problem, or so I thought. After all, I can get my Velcade at City of Hope.
Long story short, four phone calls later, they still think I have a Hickman Catheter (not the same time as a port). They still think the 11AM consult is actually a removal. They will draw labs, allegedly, but they won't be able to dispense Velcade until after the results have been reviewed by SF. And the appointment with SF isn't until 4:30PM now. So the best I can hope for is they'll have to stick me twice, which is an issue given how damn painful this stupid portacath is. They STILL don't understand what I have in my chest (a Hickman is what I had in little rock and it can be removed in about ten seconds; mine is surgically embedded under my skin and is a totally different animal -- it has to be removed under anaesthesia).
I'm not holding out hope for much other than extreme frustration out there -- probably accompanied by more people thinking that I need blood pressure meds as a result of dealing with their own incompetence. Grrrr....
Friday, September 18, 2009
Quick thoughts on immunization from BB
I forgot to mention, I did ask BB a bit more about immunization theory, etc. Some highlights.
* My immune system functionality should recover fully. This conflicts slightly with BJ commenting that she had never seen a "CD4 count return to normal" (these are the famous "helper" T-cells). BB seemed confident. We shall see.
* My immune system will "remember" previously acquired immunities. This is a big relief to me. No reimmunization is required.
* The fact that I got shingles once does not increase the likelihood that I will get it again. It is 98% gone now, by the way, and there looks to be no residual pain. BB asked why I was not immediately put on IV Acyclovir, which is consistent with his aggressive nature. By comparison, my primary care physician said that would never happen unless severe complications occurred.
* During flu season, I should NOT be vaccinated, but I should take Tamiflu instead. This is somewhat at odds with the notion of a fully-recovered immune system...shouldn't I be able to tolerate a live vaccine if that's the case? Maybe this is somewhere down the line.
I'll ask SF about this if I see him when I do the consult on the portacath, and will also ask GD about this when I see him in a couple of weeks for maintenance. I may even ask Kathy G about it when I see her next week for breakfast.
* My immune system functionality should recover fully. This conflicts slightly with BJ commenting that she had never seen a "CD4 count return to normal" (these are the famous "helper" T-cells). BB seemed confident. We shall see.
* My immune system will "remember" previously acquired immunities. This is a big relief to me. No reimmunization is required.
* The fact that I got shingles once does not increase the likelihood that I will get it again. It is 98% gone now, by the way, and there looks to be no residual pain. BB asked why I was not immediately put on IV Acyclovir, which is consistent with his aggressive nature. By comparison, my primary care physician said that would never happen unless severe complications occurred.
* During flu season, I should NOT be vaccinated, but I should take Tamiflu instead. This is somewhat at odds with the notion of a fully-recovered immune system...shouldn't I be able to tolerate a live vaccine if that's the case? Maybe this is somewhere down the line.
I'll ask SF about this if I see him when I do the consult on the portacath, and will also ask GD about this when I see him in a couple of weeks for maintenance. I may even ask Kathy G about it when I see her next week for breakfast.
Thursday, September 17, 2009
The Big "Catch Up" Blog
Okay, at long last back in Los Angeles and with enough energy to type. Catch-up time!
We arrived in Little Rock on Sunday evening. It was a strange homecoming – I suppose I’ve become reacquainted with home, having been in Los Angeles for several weeks now, and the culture shock was palpable. No restaurants open on Sunday night, the “fancy hotel” in town not having movies on demand or a minibar or room service after 9PM, etc.
Monday was very busy indeed. We saw our friends Jan and Bruce who came to Little Rock as we were finishing up back in July, and I saw that they knew many new faces whom I did not – the torch is therefore passed to a new generation of MM warriors. :) I had seven or eight tubes drawn out of my arm (I’m actually more or less relieved at this point that accessing the portacath is done sparingly). Then off to meet with the nurse.
I've become downright insistent on certain aspects of managing my care. I opted out of gene arrays (deep bone marrows) and since we weren't going to have the results of the PET scan back, I refused the fine needle aspirations. They wouldn't even know what they were looking for, or where they were looking for it! And since the last FNA came back with no abnormal cells, and I *subsequently* achieved complete remission (according to GD here in Los Angeles), I figured they didn't really need it.
I also opted out of contrast in the MRI, both because they only use it for MRIs of the brain which had been normal (my wife might debate the accuracy of these tests) since day one, and because the damn portacath makes me skittish. Nonetheless, I spent a good two hours in the ol' tube, with ear-shattering banging going on. Good thing I'm not claustrophobic, but GOD is it boring. I've learned that when one is sick, one steels oneself for all this stuff. With no disease, the MRI seemed more of a chore. I also had to re-read the loooooong list of Velcade side effects again, and it has a distinctly different flavor to somebody in remission.
Before remission: "Does this list include dying of cancer? No? Okay, I'll take it."
After remission: "Uhhh....I REALLY don't want any of this stuff to happen to me."
Suffice to say, Velcade is a pretty nasty drug, but I don't think it's as nasty as the stuff I've been on, so ahead we go.
After the MRI, I had a PET scan, and this time they DID need to access the port for the isotope infusion. I told them I wanted them to use the portacath, so they called a nurse who was skilled in accessing it. Note to self: next time, tell them ahead of time. Anyhow, she accessed it alright...and it HURT. It wasn't pure agony because she accessed the less painful of the two, but it hurt a hell of a lot worse than a stick in the arm and I was once again left wondering why I have this damn thing.
On that topic, SF at City of Hope has to be one of the nicest, most caring, most conscientious and wonderful doctors in the world. But the staff at City of Hope leaves a little something to be desired. I had told his office that I wanted a consult to discuss potentially removing the portacath and replacing it with a single-lumen, or maybe removing it altogether. And they scheduled me (without checking my availability) for surgery this past Wednesday -- which obviously didn't work out so well since I was in Arkansas. I found out about this on Monday and was able to correct it, but the sheer number of clerical errors there is staggering. I thought back to the infamous "blood pressure" conversations during my initial consult back there last November / December...it seems they haven't improved.
Monday night I had a nice dinner with Jill, and then Tuesday I showed up for the bone marrow. The PET folks left the IV in the portacath (once it was in, it actually was not uncomfortable like an arm IV is...it was just the initial placement that hurt) so that was a pretty quick procedure. And then Tuesday night we met up with our friends Jan, Bruce and Lori for a wonderful dinner...followed by far too many drinks with BJ, BB's long-time assistant. We closed the restaurant down and I was feeling it until about 6PM the next day!!!
On Wednesday, we met with BB. He confirmed that I am in "very profound complete remission." No M-protein in the blood or urine under the most sensitive tests, totally normal bone marrow, no active focal lesions (though I still have over 100 small ones that are filling in slowly), and "multiple indistinct kappa bands" under immunofixation which is the hallmark, BB says, of profound remission.
However, the sub-type of my disease, as I have noted elsewhere, is pretty unfavorable. So I can't quite be fully confident yet -- with a less aggressive sub-type I might be able to say there's a 95% chance I've been cured, but as it stands now the numbers are more like 70%. Still, I'll take 70%!!
Unfortunately, the treatment is not without some side effects. I had thought I'd made it through relatively unscathed except for muscle atrophy and vision issues (potentially cataracts). But the PET scan revealed "mild calcification of the coronary arteries" and an enlarged prostate. Great. I've beaten cancer only to die of a heart-attack while peeing in my pants.
BB, of course, wasn't alarmed by either of these things. For the prostate, he simply said I must have a large gland before cackling and winking at Jill. I appreciate the compliment but I'd rather learn about the potential medical implications of the chemo side effects. For this, I suppose I will have to go back to my primary care guy PZ. On the plus side, after everything I've gone through, a simple finger-up-the-butt-test no longer holds the abject horror that it used to.
As for the heart calcification, he was a bit more serious. And then non-chalantly suggested I lose 40 pounds.
Now, people, when I left the hospital back in March, I looked like I'd just been liberated by Ike and the boys and I didn't weigh what he was suggesting!!! I need to lose more like 15 pounds or so -- I'm not even what I'd call pudgy but I have acquired the belly of a 41-year old who works too hard and collects wine, but doesn't live so well as to have contracted gout. We'll see what this does for me. I have also been cleared to go back on Lipitor, despite what the crazy man in Canada said about it causing my cancer in the first place.
Given my aggressive subtype of the disease (within the overall "low risk" category, still), BB wants to go a little heavier on maintenance with me than with most people, prescribing 1.3 mg/m2 of Velcade weekly rather than 1.0 mg, but he's going to wait until the protocol is revised. In the meantime, starting on 9/29, I'll get Velcade weekly, Revlimid every day (15mg) for 21 days out of each 28 day cycle, and 20mg of dex on the Velcade days. In addition, he wants to see all the osteolytic lesions close up since the notion is the cells could reactivate if they are still there, and he therefore prescribed Zometa, a bone-strengthener, to be administered via IV once a month. Plus I'm going to get Testosterone injections once a month for energy and general mojo, I suppose.
Quite a recipe.
I'm hoping to return to work in November but he cautioned that I shouldn't plan on jumping back in with both feet -- I need to ease into it. So I'm going to try that one out for size with my boss when I have dinner with him and his wife soon. I'm sure he will be supportive.
My next appointment in Little Rock is in late January -- hopefully by that time, all the lesions will have filled back in with bone and I will remain in deep CR, which should make us both feel better about long-term prospects.
Other than being stranded in Little Rock for one more day due to a mechanical problem with a plane and then bad weather in Arkansas and Atlanta, that's about all there is to report for now. I'll be visiting City of Hope to check out this stupid portacath soon, and of course there is my upcoming breakfast meeting with Kathy Giusti of the MMRF which I'm looking forward to, so there will be news in the coming days.
Thanks again to all of you for your support, prayers and positivity!
We arrived in Little Rock on Sunday evening. It was a strange homecoming – I suppose I’ve become reacquainted with home, having been in Los Angeles for several weeks now, and the culture shock was palpable. No restaurants open on Sunday night, the “fancy hotel” in town not having movies on demand or a minibar or room service after 9PM, etc.
Monday was very busy indeed. We saw our friends Jan and Bruce who came to Little Rock as we were finishing up back in July, and I saw that they knew many new faces whom I did not – the torch is therefore passed to a new generation of MM warriors. :) I had seven or eight tubes drawn out of my arm (I’m actually more or less relieved at this point that accessing the portacath is done sparingly). Then off to meet with the nurse.
I've become downright insistent on certain aspects of managing my care. I opted out of gene arrays (deep bone marrows) and since we weren't going to have the results of the PET scan back, I refused the fine needle aspirations. They wouldn't even know what they were looking for, or where they were looking for it! And since the last FNA came back with no abnormal cells, and I *subsequently* achieved complete remission (according to GD here in Los Angeles), I figured they didn't really need it.
I also opted out of contrast in the MRI, both because they only use it for MRIs of the brain which had been normal (my wife might debate the accuracy of these tests) since day one, and because the damn portacath makes me skittish. Nonetheless, I spent a good two hours in the ol' tube, with ear-shattering banging going on. Good thing I'm not claustrophobic, but GOD is it boring. I've learned that when one is sick, one steels oneself for all this stuff. With no disease, the MRI seemed more of a chore. I also had to re-read the loooooong list of Velcade side effects again, and it has a distinctly different flavor to somebody in remission.
Before remission: "Does this list include dying of cancer? No? Okay, I'll take it."
After remission: "Uhhh....I REALLY don't want any of this stuff to happen to me."
Suffice to say, Velcade is a pretty nasty drug, but I don't think it's as nasty as the stuff I've been on, so ahead we go.
After the MRI, I had a PET scan, and this time they DID need to access the port for the isotope infusion. I told them I wanted them to use the portacath, so they called a nurse who was skilled in accessing it. Note to self: next time, tell them ahead of time. Anyhow, she accessed it alright...and it HURT. It wasn't pure agony because she accessed the less painful of the two, but it hurt a hell of a lot worse than a stick in the arm and I was once again left wondering why I have this damn thing.
On that topic, SF at City of Hope has to be one of the nicest, most caring, most conscientious and wonderful doctors in the world. But the staff at City of Hope leaves a little something to be desired. I had told his office that I wanted a consult to discuss potentially removing the portacath and replacing it with a single-lumen, or maybe removing it altogether. And they scheduled me (without checking my availability) for surgery this past Wednesday -- which obviously didn't work out so well since I was in Arkansas. I found out about this on Monday and was able to correct it, but the sheer number of clerical errors there is staggering. I thought back to the infamous "blood pressure" conversations during my initial consult back there last November / December...it seems they haven't improved.
Monday night I had a nice dinner with Jill, and then Tuesday I showed up for the bone marrow. The PET folks left the IV in the portacath (once it was in, it actually was not uncomfortable like an arm IV is...it was just the initial placement that hurt) so that was a pretty quick procedure. And then Tuesday night we met up with our friends Jan, Bruce and Lori for a wonderful dinner...followed by far too many drinks with BJ, BB's long-time assistant. We closed the restaurant down and I was feeling it until about 6PM the next day!!!
On Wednesday, we met with BB. He confirmed that I am in "very profound complete remission." No M-protein in the blood or urine under the most sensitive tests, totally normal bone marrow, no active focal lesions (though I still have over 100 small ones that are filling in slowly), and "multiple indistinct kappa bands" under immunofixation which is the hallmark, BB says, of profound remission.
However, the sub-type of my disease, as I have noted elsewhere, is pretty unfavorable. So I can't quite be fully confident yet -- with a less aggressive sub-type I might be able to say there's a 95% chance I've been cured, but as it stands now the numbers are more like 70%. Still, I'll take 70%!!
Unfortunately, the treatment is not without some side effects. I had thought I'd made it through relatively unscathed except for muscle atrophy and vision issues (potentially cataracts). But the PET scan revealed "mild calcification of the coronary arteries" and an enlarged prostate. Great. I've beaten cancer only to die of a heart-attack while peeing in my pants.
BB, of course, wasn't alarmed by either of these things. For the prostate, he simply said I must have a large gland before cackling and winking at Jill. I appreciate the compliment but I'd rather learn about the potential medical implications of the chemo side effects. For this, I suppose I will have to go back to my primary care guy PZ. On the plus side, after everything I've gone through, a simple finger-up-the-butt-test no longer holds the abject horror that it used to.
As for the heart calcification, he was a bit more serious. And then non-chalantly suggested I lose 40 pounds.
Now, people, when I left the hospital back in March, I looked like I'd just been liberated by Ike and the boys and I didn't weigh what he was suggesting!!! I need to lose more like 15 pounds or so -- I'm not even what I'd call pudgy but I have acquired the belly of a 41-year old who works too hard and collects wine, but doesn't live so well as to have contracted gout. We'll see what this does for me. I have also been cleared to go back on Lipitor, despite what the crazy man in Canada said about it causing my cancer in the first place.
Given my aggressive subtype of the disease (within the overall "low risk" category, still), BB wants to go a little heavier on maintenance with me than with most people, prescribing 1.3 mg/m2 of Velcade weekly rather than 1.0 mg, but he's going to wait until the protocol is revised. In the meantime, starting on 9/29, I'll get Velcade weekly, Revlimid every day (15mg) for 21 days out of each 28 day cycle, and 20mg of dex on the Velcade days. In addition, he wants to see all the osteolytic lesions close up since the notion is the cells could reactivate if they are still there, and he therefore prescribed Zometa, a bone-strengthener, to be administered via IV once a month. Plus I'm going to get Testosterone injections once a month for energy and general mojo, I suppose.
Quite a recipe.
I'm hoping to return to work in November but he cautioned that I shouldn't plan on jumping back in with both feet -- I need to ease into it. So I'm going to try that one out for size with my boss when I have dinner with him and his wife soon. I'm sure he will be supportive.
My next appointment in Little Rock is in late January -- hopefully by that time, all the lesions will have filled back in with bone and I will remain in deep CR, which should make us both feel better about long-term prospects.
Other than being stranded in Little Rock for one more day due to a mechanical problem with a plane and then bad weather in Arkansas and Atlanta, that's about all there is to report for now. I'll be visiting City of Hope to check out this stupid portacath soon, and of course there is my upcoming breakfast meeting with Kathy Giusti of the MMRF which I'm looking forward to, so there will be news in the coming days.
Thanks again to all of you for your support, prayers and positivity!
Wednesday, September 16, 2009
Trapped in Little Rock
Folks, I was planning a major blog update but I'm just exhausted. Our flight was delayed for four hours due to mechanical issues and then weather, so our connecting flight would have been missed and we'd have been stranded in Atlanta. Instead, we decided just to stay another night in Little Rock. But it was a bit of a stressful afternoon and evening, so I'll provide the big update tomorrow.
I will say that BB declared that I am in "very profound complete remission" which is excellent news, obviously. We have learned, however, that the chemo has damaged some heart tissue and my prostate, neither of which are serious issues (so says BB) but both of which are a little depressing.
Anyhow...much more to come tomorrow!
I will say that BB declared that I am in "very profound complete remission" which is excellent news, obviously. We have learned, however, that the chemo has damaged some heart tissue and my prostate, neither of which are serious issues (so says BB) but both of which are a little depressing.
Anyhow...much more to come tomorrow!
Tuesday, September 8, 2009
COMPLETE REMISSION
Just back from GD's office.
SPEP analysis of blood: "No evidence of monoclonal protein."
Immunofixation: "No monoclonal protein."
Light-chain analysis of urine: "All protein is albumin with no globulin."
That, my friends, is complete remission.
I am waiting to hear these words from BB's mouth after he sees all this plus the PET and MRI before I throw a huge party, but that's not going to stop me from having one hell of a great bottle of wine this evening.
The road is far from over but the worst is behind me, I believe -- how nice it is to say that, as opposed to "well, let's just see how long this lasts" which is the best I would have if I'd gone for treatment other than Total Therapy.
THANK YOU, all of you, for your love, kindness, support, encouragement, prayers, positive thoughts, and help. You have all been so important to my getting this far.
I will report back from Arkansas in about eight days. Until then, my friends, be well!!!
SPEP analysis of blood: "No evidence of monoclonal protein."
Immunofixation: "No monoclonal protein."
Light-chain analysis of urine: "All protein is albumin with no globulin."
That, my friends, is complete remission.
I am waiting to hear these words from BB's mouth after he sees all this plus the PET and MRI before I throw a huge party, but that's not going to stop me from having one hell of a great bottle of wine this evening.
The road is far from over but the worst is behind me, I believe -- how nice it is to say that, as opposed to "well, let's just see how long this lasts" which is the best I would have if I'd gone for treatment other than Total Therapy.
THANK YOU, all of you, for your love, kindness, support, encouragement, prayers, positive thoughts, and help. You have all been so important to my getting this far.
I will report back from Arkansas in about eight days. Until then, my friends, be well!!!
Monday, September 7, 2009
An insomniac's thoughts on the Indian subcontinent
Can't sleep. Not sure why. Part of it is pain from the shingles, which though getting better is still troublesome. Part of it is wanting to get the results of the blood tests back on Tuesday -- if it's zero, it means I'm almost certainly in complete remission. If it's not, it's a bad thing.
At any rate, can't sleep.
I received an email from a friend of mine with whom I used to work, who now does charitable work for the Gates foundation in India (she is, herself, Indian). It was great to hear from her (hi there, AR, now reading along!)
I also received an email from a fellow MM traveler, also initialed AR oddly enough although she is from Jersey, not Mumbai! :) In our back-and-forth the concept of Valtrex (a vaccine for shingles) as a prophylactic came up. My dear mother, bless her heart, keeps insisting that I get this (it's routine for people over 60) but doesn't quite grasp that it's a live vaccine and my system can't handle it.
Between these two seemingly unrelated contacts, I started thinking about how MM patients that have gone through SCT cannot tolerate live vaccines. The list of live vaccines could include those famous shots that people need before traveling to India or Africa. So I may not be going anywhere all that exotic. I wonder how this might impact my career?
In any case, I think I need to learn more about the whole vaccination thing. When I do my consult at City of Hope for this stupid portacath, I will try to also get in to see Dr. SF to discuss vaccination theory, antibodies in a post SCT immune system, whether I'm really susceptible to everything again, etc.
Always something more to learn -- and that applies much more broadly than MM, of course.
Did I mention that I'm having a breakfast meeting in a couple of weeks with Kathy Giusti of the MMRF? I've spoken with her on the phone in the past, and I'm really looking forward to finally meeting her. I hope to try to give something back by volunteering some time as a board member if they have a use for me. We shall see.
At any rate, can't sleep.
I received an email from a friend of mine with whom I used to work, who now does charitable work for the Gates foundation in India (she is, herself, Indian). It was great to hear from her (hi there, AR, now reading along!)
I also received an email from a fellow MM traveler, also initialed AR oddly enough although she is from Jersey, not Mumbai! :) In our back-and-forth the concept of Valtrex (a vaccine for shingles) as a prophylactic came up. My dear mother, bless her heart, keeps insisting that I get this (it's routine for people over 60) but doesn't quite grasp that it's a live vaccine and my system can't handle it.
Between these two seemingly unrelated contacts, I started thinking about how MM patients that have gone through SCT cannot tolerate live vaccines. The list of live vaccines could include those famous shots that people need before traveling to India or Africa. So I may not be going anywhere all that exotic. I wonder how this might impact my career?
In any case, I think I need to learn more about the whole vaccination thing. When I do my consult at City of Hope for this stupid portacath, I will try to also get in to see Dr. SF to discuss vaccination theory, antibodies in a post SCT immune system, whether I'm really susceptible to everything again, etc.
Always something more to learn -- and that applies much more broadly than MM, of course.
Did I mention that I'm having a breakfast meeting in a couple of weeks with Kathy Giusti of the MMRF? I've spoken with her on the phone in the past, and I'm really looking forward to finally meeting her. I hope to try to give something back by volunteering some time as a board member if they have a use for me. We shall see.
Saturday, September 5, 2009
Shingles and cataracts...
Hello all -- hope you are enjoying your weekend. Just a quick update.
The pain from the shingles is still there, but it appears to be improving ever so slightly. I didn't need Vicodin yesterday or this morning. Hopefully that bodes well for the pain going away when the shingles do, rather than lingering forever.
I contacted doctor SF at City of Hope about the portacath because rather than seeing a general surgeon for it, I thought a cancer center that is used to placing and accessing these things thousands of times would be the best way to go. His office is setting up a consult, but I won't be able to do anything about the portacath until after my followup in Little Rock on the 14th-16th of this month. I honestly don't know if I want them using the portacath versus just sticking stuff in my arms. The left side of the portacath doesn't hurt any longer, but the right side is sensitive to the touch. It's not infected -- there's no redness or anything like that, I have no fever or other signs of infection, and I've had a doctor and three nurses look at it to make sure. It's something going on with the placement.
Lastly, I had mentioned before that the dex impacted my vision. It more or less rebounded when I went off the dex, but I do feel there could be some mild lingering affect. Right now, for example, my visual acuity isn't that great. Dr. GD told me Dex causes cataracts (yet another issue with that horrible drug). I need to make an appointment with an opthomologist to get that checked out. I also called GD's office yesterday to get the SPEP information (M-spike data) from my blood work last week, but he was gone and they won't let the lab technician give me results over the phone. So I have to wait until Tuesday to find out. Hopefully it will be absolutely zero this time -- it will be a big reading, for sure. If it's gone, then I'm in complete remission and I'll hopefully have favorable progress on the bones being repaired when I get the PET and MRI in ten days. If it's back, then I either haven't achieved remission, or worse yet I've achieved it and lost it -- I don't want to think about those consequences because I think they are exceedingly unlikely.
Be well, all of you!
The pain from the shingles is still there, but it appears to be improving ever so slightly. I didn't need Vicodin yesterday or this morning. Hopefully that bodes well for the pain going away when the shingles do, rather than lingering forever.
I contacted doctor SF at City of Hope about the portacath because rather than seeing a general surgeon for it, I thought a cancer center that is used to placing and accessing these things thousands of times would be the best way to go. His office is setting up a consult, but I won't be able to do anything about the portacath until after my followup in Little Rock on the 14th-16th of this month. I honestly don't know if I want them using the portacath versus just sticking stuff in my arms. The left side of the portacath doesn't hurt any longer, but the right side is sensitive to the touch. It's not infected -- there's no redness or anything like that, I have no fever or other signs of infection, and I've had a doctor and three nurses look at it to make sure. It's something going on with the placement.
Lastly, I had mentioned before that the dex impacted my vision. It more or less rebounded when I went off the dex, but I do feel there could be some mild lingering affect. Right now, for example, my visual acuity isn't that great. Dr. GD told me Dex causes cataracts (yet another issue with that horrible drug). I need to make an appointment with an opthomologist to get that checked out. I also called GD's office yesterday to get the SPEP information (M-spike data) from my blood work last week, but he was gone and they won't let the lab technician give me results over the phone. So I have to wait until Tuesday to find out. Hopefully it will be absolutely zero this time -- it will be a big reading, for sure. If it's gone, then I'm in complete remission and I'll hopefully have favorable progress on the bones being repaired when I get the PET and MRI in ten days. If it's back, then I either haven't achieved remission, or worse yet I've achieved it and lost it -- I don't want to think about those consequences because I think they are exceedingly unlikely.
Be well, all of you!
Wednesday, September 2, 2009
New lab results (no M-protein data yet), and portacath update, etc.
I went back to Dr. GD's office, carrying my jug of urine this time, so they could draw two more vials of blood that must be assessed at the same time as the small cup of urine (not to be confused with the big jug) that I'll be sending back to Arkansas.
I got my initial labs back from two days ago. Some curious things.
1. White counts are lower than I expected at 4.0. This is a little troubling -- I'd have thought they would be higher, especially given the shingles. They aren't wildly low, but given that Revlimid is supposed to suppress blood counts and I'm going to be on that for the next three years, I wouldn't want my immune system unable to respond to an infection.
2. RDW -- the variability in the width of red blood cells -- is high again. This seems like a meaningless figure except that one nurse several months ago said it was "high in people with cancer" and it had finally normalized before I left Arkansas. I'm going to chalk it up to red blood cells still growing, maybe. I dunno. Something to ask BB about, perhaps.
3. Uric Acid is a little high at 8.3 (normal is 3.6-7.7) and Creatinine is at 1.0, still very healthy but higher than what I've been running. I think this means the acyclovir could be working my kidneys pretty hard and I need to drink more water.
4. I have a high number of monocytes -- a type of which blood cell -- and I have "atypical lymphs" which don't sound good. It's a test I have not seen done in Arkansas.
In other news, platelets are normal at 185, liver function is mostly normal except for ALT which is midly elevated. Total protein is 6.3 and Albumin is 4.0, which means immunoglobulin is 2.3. Not too bad -- hopefully there's no room for M-protein within that number. I should find out on Friday or Monday at the latest.
They didn't even try to access the portacath today. I spoke with a nurse about it because TWO DAYS LATER it still hurts. From her poking and prodding, I can say that the area above (towards my head) of the placement is okay, but beneath it is VERY tender and painful to the touch. The nurse said she had a couple of patients in the past who found the portacath unbearable to use. One of them had it removed and a new one installed and had no problem with the new one.
Great.
I'm going to explore that option now, since this is far too painful to use.
Shingles still there, still hurt like hell.
Don't get Multiple Myeloma, people.
I got my initial labs back from two days ago. Some curious things.
1. White counts are lower than I expected at 4.0. This is a little troubling -- I'd have thought they would be higher, especially given the shingles. They aren't wildly low, but given that Revlimid is supposed to suppress blood counts and I'm going to be on that for the next three years, I wouldn't want my immune system unable to respond to an infection.
2. RDW -- the variability in the width of red blood cells -- is high again. This seems like a meaningless figure except that one nurse several months ago said it was "high in people with cancer" and it had finally normalized before I left Arkansas. I'm going to chalk it up to red blood cells still growing, maybe. I dunno. Something to ask BB about, perhaps.
3. Uric Acid is a little high at 8.3 (normal is 3.6-7.7) and Creatinine is at 1.0, still very healthy but higher than what I've been running. I think this means the acyclovir could be working my kidneys pretty hard and I need to drink more water.
4. I have a high number of monocytes -- a type of which blood cell -- and I have "atypical lymphs" which don't sound good. It's a test I have not seen done in Arkansas.
In other news, platelets are normal at 185, liver function is mostly normal except for ALT which is midly elevated. Total protein is 6.3 and Albumin is 4.0, which means immunoglobulin is 2.3. Not too bad -- hopefully there's no room for M-protein within that number. I should find out on Friday or Monday at the latest.
They didn't even try to access the portacath today. I spoke with a nurse about it because TWO DAYS LATER it still hurts. From her poking and prodding, I can say that the area above (towards my head) of the placement is okay, but beneath it is VERY tender and painful to the touch. The nurse said she had a couple of patients in the past who found the portacath unbearable to use. One of them had it removed and a new one installed and had no problem with the new one.
Great.
I'm going to explore that option now, since this is far too painful to use.
Shingles still there, still hurt like hell.
Don't get Multiple Myeloma, people.
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