Hey there folks. Sorry to vanish on you for a bit -- I've been working 18 hours a day, 7 days a week basically for the last two weeks.
Medical highlights:
* I got over my chest-cold about two weeks ago. I also got rid of my thrush. I subsequently saw Dr. GD who said that he would NOT recommend I get IVIG, because my IgG at around 530 isn't low enough to benefit from it. He sent off a letter to BB asking him if he was sure I should get it. In the meantime, Dr. RZ (a colleague of my primary care physician) also said it wouldn't do any good at my current IgG level. So no IVIG after all that.
* May have been the wrong choice, and I am now sick again. This SUCKS. This is chest cold number five since September.
* I am bruising like a grape from low platelets. My platelets hover between 100 and 115 these days, with slight improvement when I'm off the Revlimid for a week. My white count is probably not going to see the sunny side of 3.0 again unless I dose-reduce the Revlimid. It's at 2.9 now, and that's not good given the need to get rid of these damn colds. I am armed with the strong antibiotic they gave me before (Augmentin) and am taking that as well as Tamiflu. We'll see what happens.
* I got a intramuscular shot of testosterone from a new guy, Dr. LB, who unlike the other urologist said intramuscular shots were highly effective and he gives them all the time. This should help with muscle wasting, energy and mojo. We'll see if I turn into Barry Bonds.
* I have been blessedly free from the horrible cramps-in-the-middle-of-the-night, more or less, since I started that supplement with magnesium and zinc. I did get two horrible ones this past Tuesday, thought. So maybe Velcade + Dex + Rev > Magnesium supplements. The only thing I might add to the cocktail would be potassium, so perhaps some raisins and a potato on Tuesdays might come in handy.
* I will be heading back to Arkansas in May for the next round of follow-up tests, and to see if I can get a balloon kyphoplasty to restore some height by "poofing up" the two mangled vertebrae. As for the test themselves, we'll be looking for continued healing of my bones. There was a lot of progress made from September to January, and I had one additional course of Zometa. I'm not sure if it will be this time, or next time, but sooner or later they will be healed and I will have, God willing, MRI Complete Remission which is a key next step in ensuring that I'm cured.
I'm sure I'm forgetting something, but I've got to jump back on this conference call. More to come, with a resumption of my long-overdue-charts, soon! Along with, perhaps, some kind of rendering of my backside (complete with marks for bone marrow biopsies) in response to a request from a fellow MM sufferer. :)
Thursday, March 25, 2010
Friday, March 12, 2010
Bone marrow biopsy blemishes and IVIG update
Hello there folks!
Two unrelated little things, which we'll do in reverse order.
I will be getting IVIG a week from Tuesday, along with Velcade, both administered by Dr. G at UCLA's hospital. IVIG is evidently a money loser as an infusion unless it can be done in a hospital where other services are provided and charged for. I'll be getting my Velcade done then as well. The IVIG is a SIX HOUR infusion so it's gonna be a long, dull day for the kid.
I am off Revlimid this week, so I am not taking the magnesium supplements. So far, no leg cramps. I'll go back on them when I resume Revlimid on Tuesday. Hopefully my counts can recover a bit this week -- WBC, HGB and Platelets are all lower than I'd like.
Now, as for the dime-sized black spots on my butt, I figured it was time to do something about them or at least look into the situation. My first bone marrow biopsy was done by Dr. SH in Beverly Hills and it left no mark. Subsequent to that, between bone marrows and gene arrays and fine needle aspirates I have probably ten black spots on my butt. It's not the end of the world, but I also look (as I've said before) that I went hunting with Dick Cheney and he unloaded a bunch of buckshot in my backside.
The dermatologist told me there are pigmentation issues with these scars and prescribed a bleaching cream that can be used to touch them up. He also noticed there are indentations in these areas, which can be filled in. I thought I'd try to clear up the color first, since that sounded less invasive. So I bought some goop and we'll see if that does the trick. A thousand words will have to suffice in lieu of a picture, I'm afraid.
Closing this back around to Dr. G at UCLA, I spoke with him a bit about my therapy. He said that regardless of whether or not I was cured, I was in "a very good place." Now, he is a general Hem / Onc (probably less Hem than Onc) so he's not a Myeloma specialist per se, so frankly his opinion isn't worth all that much in terms of illuminating the nuances of my therapeutic choices and their ramifications. But it's all good at this point. I find myself checking the most recent slide from Arkansas that appeals:
This is probably a fairly easy chart to interpret. It shows compete remission duration over time for low-risk versus high-risk patients in the Total Therapy 3 trial. With five years of data now, 90% of low risk patients that achieve complete remission remain in complete remission five years later. And the curve is flat after about 40 months or so...that is, no patients lost remission after 40 months. Of the 209 patients that remained in remission at the 40 month period, all 209 patients are still in remission at 60 months. That's not coincidence. That's cure.
Which brings me to the following chart:
Fitting these to a regression curve, the cure fraction for low-risk patients that achieve complete response is 87.6%. And the farther one is out on that curve, the better the odds are.
Very good news for this sub-group of patients.
This chart, unfortunately, also points out the tremendous amount of work remaining to help those with genomically-defined high risk disease -- as well as those who lose remission despite having a low-risk signature. Fortunately new classes of drugs are coming out that will hopefully tell a much brighter story for Myeloma sufferers!
Two unrelated little things, which we'll do in reverse order.
I will be getting IVIG a week from Tuesday, along with Velcade, both administered by Dr. G at UCLA's hospital. IVIG is evidently a money loser as an infusion unless it can be done in a hospital where other services are provided and charged for. I'll be getting my Velcade done then as well. The IVIG is a SIX HOUR infusion so it's gonna be a long, dull day for the kid.
I am off Revlimid this week, so I am not taking the magnesium supplements. So far, no leg cramps. I'll go back on them when I resume Revlimid on Tuesday. Hopefully my counts can recover a bit this week -- WBC, HGB and Platelets are all lower than I'd like.
Now, as for the dime-sized black spots on my butt, I figured it was time to do something about them or at least look into the situation. My first bone marrow biopsy was done by Dr. SH in Beverly Hills and it left no mark. Subsequent to that, between bone marrows and gene arrays and fine needle aspirates I have probably ten black spots on my butt. It's not the end of the world, but I also look (as I've said before) that I went hunting with Dick Cheney and he unloaded a bunch of buckshot in my backside.
The dermatologist told me there are pigmentation issues with these scars and prescribed a bleaching cream that can be used to touch them up. He also noticed there are indentations in these areas, which can be filled in. I thought I'd try to clear up the color first, since that sounded less invasive. So I bought some goop and we'll see if that does the trick. A thousand words will have to suffice in lieu of a picture, I'm afraid.
Closing this back around to Dr. G at UCLA, I spoke with him a bit about my therapy. He said that regardless of whether or not I was cured, I was in "a very good place." Now, he is a general Hem / Onc (probably less Hem than Onc) so he's not a Myeloma specialist per se, so frankly his opinion isn't worth all that much in terms of illuminating the nuances of my therapeutic choices and their ramifications. But it's all good at this point. I find myself checking the most recent slide from Arkansas that appeals:
This is probably a fairly easy chart to interpret. It shows compete remission duration over time for low-risk versus high-risk patients in the Total Therapy 3 trial. With five years of data now, 90% of low risk patients that achieve complete remission remain in complete remission five years later. And the curve is flat after about 40 months or so...that is, no patients lost remission after 40 months. Of the 209 patients that remained in remission at the 40 month period, all 209 patients are still in remission at 60 months. That's not coincidence. That's cure.
Which brings me to the following chart:
Very good news for this sub-group of patients.
This chart, unfortunately, also points out the tremendous amount of work remaining to help those with genomically-defined high risk disease -- as well as those who lose remission despite having a low-risk signature. Fortunately new classes of drugs are coming out that will hopefully tell a much brighter story for Myeloma sufferers!
Monday, March 8, 2010
Feeling better, and some reflections...
Happy Monday, my friends.
First, thanks to those of you who were kind enough to write to check up on me!
I want to emphasize that when I report on feeling crummy, as I did at the end of last week, I am doing so in the interest of faithfully recounting what's going on so that others can learn. I am not complaining -- far from it. I'm glad to be alive and happy to accept the relatively minor side effects of maintenance therapy!
I was thinking about this, and one important notion occurred to me. I have been guilty, to some degree, of viewing the past seven months as the first seven months of maintenance, which is a three years process before I can say I'm through with therapy and (hopefully!) cured.
Instead, I should be viewing this as seven months, already, of disease free life. Had I opted for disease control rather than trying to go for a potentially curative approach, I might have a year or I might have three or I might have five years of remission. Nobody really knows. But seven months is seven months, and it's nothing to sneeze at, and I should be enjoying every day. I think this is a very important message. About 80% of the time, I'm living my life as though I don't have disease (which in fact I don't). The other 20% of the time I have to pop pills, get infusions, deal with side effects, whatever. But in any case, I'm in a group called "progression free survival" or "event free survival." So I should be enjoying every day -- and that's my message to all of you. Enjoy every day!!
For those interested, my chest cold is 98% gone. The thrush is, I *think* gone, and the GI distress is mostly gone although I'm sure I have been wiped clean of helpful digestive tract bacteria so I'm going to continue to pop acidophilus pills for a bit here.
I also wanted to touch briefly on an interview that Parade magazine did with Kathy Giusti of the MMRF. I have nothing but deep, deep respect and gratitude for this woman and her continuing efforts in the fight against this disease. But I have to say, the article was not very uplifting, despite assertions that it was. Among other things, Kathy said that "Myeloma is uniformly fatal." And she continues to focus on her own syngeneic transplant (from an identical twin, which confers the curative benefits of an allogeneic transplant without the risk of graft versus host disease) as being a temporary remission. In the case of the first statement, it's hard to view that as uplifting...I think it's defeatist and at least somewhat misleading. In the second case, I know she wants to maintain a sense of urgency to her efforts and I applaud that -- but I also hope she knows that she's going to be around for a long time.
Anyhow, that's enough rambling for today. Enjoy today, and every day, people!
First, thanks to those of you who were kind enough to write to check up on me!
I want to emphasize that when I report on feeling crummy, as I did at the end of last week, I am doing so in the interest of faithfully recounting what's going on so that others can learn. I am not complaining -- far from it. I'm glad to be alive and happy to accept the relatively minor side effects of maintenance therapy!
I was thinking about this, and one important notion occurred to me. I have been guilty, to some degree, of viewing the past seven months as the first seven months of maintenance, which is a three years process before I can say I'm through with therapy and (hopefully!) cured.
Instead, I should be viewing this as seven months, already, of disease free life. Had I opted for disease control rather than trying to go for a potentially curative approach, I might have a year or I might have three or I might have five years of remission. Nobody really knows. But seven months is seven months, and it's nothing to sneeze at, and I should be enjoying every day. I think this is a very important message. About 80% of the time, I'm living my life as though I don't have disease (which in fact I don't). The other 20% of the time I have to pop pills, get infusions, deal with side effects, whatever. But in any case, I'm in a group called "progression free survival" or "event free survival." So I should be enjoying every day -- and that's my message to all of you. Enjoy every day!!
For those interested, my chest cold is 98% gone. The thrush is, I *think* gone, and the GI distress is mostly gone although I'm sure I have been wiped clean of helpful digestive tract bacteria so I'm going to continue to pop acidophilus pills for a bit here.
I also wanted to touch briefly on an interview that Parade magazine did with Kathy Giusti of the MMRF. I have nothing but deep, deep respect and gratitude for this woman and her continuing efforts in the fight against this disease. But I have to say, the article was not very uplifting, despite assertions that it was. Among other things, Kathy said that "Myeloma is uniformly fatal." And she continues to focus on her own syngeneic transplant (from an identical twin, which confers the curative benefits of an allogeneic transplant without the risk of graft versus host disease) as being a temporary remission. In the case of the first statement, it's hard to view that as uplifting...I think it's defeatist and at least somewhat misleading. In the second case, I know she wants to maintain a sense of urgency to her efforts and I applaud that -- but I also hope she knows that she's going to be around for a long time.
Anyhow, that's enough rambling for today. Enjoy today, and every day, people!
Friday, March 5, 2010
Did somebody get the name of that bus...
Hello folks. I have been in gastro-intestinal hell for the last 36 hours. A hell-spawned conflagration of extremely spicy Thai food for dinner on Wednesday night (from which I may have gotten food poisoning) combined with, I am sure, my stomach being wiped clean of any helpful bacteria by the strong antibiotics I am taking to get rid of this chest cold (which is STILL not totally gone, though it is finally almost out of my system) plus the thrush plus the side effects of Dex (in this case, heartburn) plus the competing dynamics of Revlimid + Dex (constipation) and Senna (taken to combat this)...
Anyhow let's just say I was sicker yesterday than at any time since my transplants, and in some cases it was worse! It's been 36 hours and I am only now beginning to feel like myself again. Blecch!
I'm leaning towards getting IvIG next week now that most of my symptoms have gone from the outgoing cold. Hopefully that will ensure I don't get every little germ that blows through.
Have a good weekend, everyone!
P.S. Thanks to all for the tips on probiotics. I will be taking a few days' worth of acidophilus pills, and eating some yogurt, to help rebuild the good bacteria that's been wiped out by the Augmentin.
Anyhow let's just say I was sicker yesterday than at any time since my transplants, and in some cases it was worse! It's been 36 hours and I am only now beginning to feel like myself again. Blecch!
I'm leaning towards getting IvIG next week now that most of my symptoms have gone from the outgoing cold. Hopefully that will ensure I don't get every little germ that blows through.
Have a good weekend, everyone!
P.S. Thanks to all for the tips on probiotics. I will be taking a few days' worth of acidophilus pills, and eating some yogurt, to help rebuild the good bacteria that's been wiped out by the Augmentin.
Wednesday, March 3, 2010
Quick update
Chest cold is finally starting to resolve. My white count yesterday was at 4 -- a measly 4. That's basically below normal, and this in response to a lot of crud going on with me. So the Revlimid and Velcade are definitely leaving a mark, so to speak. Because GD's office doesn't do CRP, I can't cross reference white count against actual activity that should be driving it, so it may be that 4.0 isn't that big a deal and the real issue with me getting these colds is the low IgG (around 570 still, versus normal range of 700-1400 and my incredulous peak of 16,000!!!!! (over 90% of which was crappy monoclonal cancer).
As for the thrush, I'm rising my mouth with this hideous rotten tang called Nysantril or something like that. The docs here will know. I was swallowing it but then I realized the thrush is only in my mouth, so I'm rising around and spitting it out which makes it about 30% less awful. I have no idea if it is gone or not...will need to see the doctor soon on renewing my Lipitor (which is how this whole journey started in October of 2008). But I'm nearly finished.
Current plan is to try to get IVIG (which really, it seems to me, is IvIgG but whatever) next Tuesday. However I am so busy at work I haven't even had time to try to set up the appointment! In fact I've already delegated that to PinnacleCare, who are awesome, but I don't even have time to call them back!!
Work work work...
As for the thrush, I'm rising my mouth with this hideous rotten tang called Nysantril or something like that. The docs here will know. I was swallowing it but then I realized the thrush is only in my mouth, so I'm rising around and spitting it out which makes it about 30% less awful. I have no idea if it is gone or not...will need to see the doctor soon on renewing my Lipitor (which is how this whole journey started in October of 2008). But I'm nearly finished.
Current plan is to try to get IVIG (which really, it seems to me, is IvIgG but whatever) next Tuesday. However I am so busy at work I haven't even had time to try to set up the appointment! In fact I've already delegated that to PinnacleCare, who are awesome, but I don't even have time to call them back!!
Work work work...
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