Very quick update, as I've been busy with a wonderful visit from my brother Pete who was kind enough to visit me in Arkansas during far more dire times. It's great to spend time with him while healthy!
At any rate: quick and uneventful visit to the doctor's today. Counts are good! White count is 5.1, hemoglobin 13.9, platelets 140. Solid in all respects, and in the event of the WBC and platelets, a tick up. Hemoglobin can be reduced due to water retention from the dex, which I took this morning, so I'm not concerned about that too much.
No news on protein or other stuff...probably not for another two weeks.
Now...I know we have had a bit of back-and-forth on Total Therapy on this and other blogs recently. I want to restate my beliefs very clearly:
1. For newly-diagnosed patients that have not undergone other treatment, and who are young and healthy enough to withstand it (i.e. 40 and healthy = a good candidate, 78 and sick = not a good candidate), this program is the right choice. Clearly, as I'm about to explain.
2. 15% or so of patients have high-risk disease which is not as responsive to Total Therapy as the other 85%; and some people are allergic to one of the three long-term agents (Velcade, Revlimid and Dex) that are used over a period of years as part of the TT protocol, so it is not for everybody -- just for newly-diagnosed young patients that are low-risk.
3. For folks that have been treated elsewhere, or who have high-risk disease, there is still hope from new treatments and new research. Total Therapy is not the answer for everybody.
Now..having said that, let me just cite a few statistics from the recent briefing I received from Arkansas.
1. NINETY PERCENT of low-risk patients in Total Therapy 3 REMAIN IN COMPLETE REMISSION AT FIVE YEARS. Compare this with American Cancer Society statistics stating that five year survival is 34%.
2. After five years post-diagnosis, the likelihood that a random person in Total Therapy 3 is still alive is HIGHER THAN THE AVERAGE FOR A US CITIZEN OF THE SAME AGE.
3. Statistics being built over five years indicate that SEVENTY FOUR PERCENT OF LOW-RISK PATIENTS UNDER TOTAL THERAPY THREE WILL BE CURED OF THE DISEASE. Compare with other programs that still claim it is incurable!!!
4. The median survival rate of patients under Total Therapy 3 is projected (based on statistics) to be FIFTEEN YEARS. The median age at diagnosis is 71. Do the math: people are being cured and dying of something else!
5. Ultimately, these and other data allow Arkansas to publish the following statemenst: "Cure is anticipated for the majority of genomically defined low-risk myeloma." And: "The newly diagnosed multiple myeloma patient can expect to live more than 10 years." Where else in the world would this statement be true?
I reiterate: I will beat this disease. Any others out there reading this, if you are newly-diagnosed, without drug-resistant disease, and in good health: go to Arkansas. Go there. Get Total Therapy. Keep a positive attitude. And be thankful that you were diagnosed early enough, and in a position, to receive this type of treatment. We are unlucky to have this diagnosis, but we still only represent about a third of patients seen there. I've met, and become friends with, a great many good people who were not so lucky...some of whom are no longer with us, some of whom are resilient and upbeat in the face of their disease. BB is a scientific atheist...so I will save my prayers for those that aren't able to receive the full benefit of BB's program. The rest of you: get there!
Tuesday, November 3, 2009
Wednesday, October 28, 2009
Side effects and how to fight them, and what's Michael York doing in my blood wearing a jumpsuit!!!
I had written that I was becoming concerned about some of the side effects of maintenance, particularly as pertain exhaustion and overall well-being. I'm pleased to report that there appears to be an ebb and a flow to the severity of this. I felt pretty good yesterday and I'm sure today and tomorrow will be rough unless I can get more sleep, but at this point (knock on wood) I feel like it is pretty much manageable.
* Dexamethasone Side Effects (20mg every Tuesday)
- Dex voice, usually comes on Tuesday afternoon and lasts through Wednesday, no real cure although Pantoprazole probably doesn't hurt
- Sleeplessness. Hits Tuesday night and runs at least through Wednesday night. Have been treating with use of Ambien. Usually slightly more effective on the second night than on the first. May need to treat with two glasses of red wine followed by Ambien, and make sure not to drink anything with caffeine on these days (I had three yesterday which probably didn't help the situation).
- Hunger. Sometimes, noticeable, other times not a big deal. It's almost like it locks in a constant level of hunger in your subconscious based on where your brain was at the time the dex kicks in (by my estimate yesterday, about 90 minutes after taking it). In the past, I have been starving at times -- like no matter how much I ate, my stomach was telling me I had no food in it. My brain was also not sending out "you're full, no need to eat messages." But yesterday, I was late taking the Dex (I usually do it first thing) and I had a Zone Bar (200 cals) and a couple of low-cal, high-fiber tortillas (this is a more lyrical way of saying I chewed on a thin disc made of sawdust -- the nutritional content outstrips the flavor). But this was very filling, and I took the Dex just before the two tortillas. I ate a light lunch and a light dinner, and I don't feel starving. My stomach, at least, feels sated. I could certainly eat more, but I don't have the constant ravenous feeling. So advice: consider taking Dex early in the day but definitely take with food. I notice that this is compliant with the dosing information as well. My brain is still playing tricks on me, and failing to send out the "you are full" signal that we usually get, but my stomach still feels somewhat full, so it's preventing me from eating everything in sight. This is a good trick to know.
- Weight gain. Not quite the same thing as hunger. I've noticed that I drink three liters of liquid a day and pee no more than half of this back out. This fluid retention was a real pain when I was on the high-dose pulses of Dex. I noticed it at bit last week on the Dex but I am hopeful that it will be manageable. I think I only gained about five points (not the twenty that I did in Little Rock on that last dose!) but it took almost a full week to be rid of it, and here I am back on the Dex now. I will keep tabs on this.
- Heartburn. I did not take Pantoprazole yesterday, but I did not get heartburn. I will take some this morning as a preventative. It may be that if you take it every other time, that's enough. For sure, my doc would tell me to take it every time (and probably every day) but the fewer pills I really need (and these are optional supportive care, not therapy) the better, is the way I look at it.
- Muscle atrophy. I notice it, still, but the two-times-a-week grueling physical therapy appears to be more than keeping it at bay, at this point. I see muscle definition improving throughout my body, which is a welcome relief. Even if I have to go to one day a week once work resumes, it should be enough to counteract the dex.
* Revlimid Side Effects (15mg / day, days 1-21 of 28 day cycle)
- Platelet suppression. Before maintenance my platelets were over 150. Last week they were 120. After a week off, they are back at 130. I don't know if they will continue to climb or if Revlimid will hit them immediately. It could be that 120 will be the "new normal" for the next three years, and that's not enough to have any real impact on me. If it gets below 100, then we have to start taking corrective action as it may interfere with Velcade administration (so said the nurse yesterday). So I'll continue to monitor this closely.
- Red blood count suppression. Before maintenance my Hemoglobin had climbed back to 14.7, fully healthy! In subsequent weeks it was 14.3 and then 13.5. I think (from memory) last week was 13.3. I then had my time off Revlimid, and yesterday's count was 14.7. So happily this one seems to bounce back fully during the week off. I will be pleased if it is able to do this regularly as having a good red blood count is essential to feeling good.
- White blood count suppression. I didn't think this was going to be an issue, as before maintenance I was either 5.3 or 5.5. Yesterday's blood count was 3.9. There remain a high percentage of young cells so it could be the system is still climbing, albeit in fits and starts and not helped by the Revlimid or Velcade, but 3.9 is starting to be disconcerting, especially during flu season. WASH YOUR HANDS, EVERYBODY!!! Below 3.0 and they will not want to provide Velcade, so let's hope this is a bottoming out. I REALLY DO NOT WANT MORE OF THAT DAMN NEUPOGEN!
- Mojo suppression. I've written about this before but I'll be more blunt now. There is an almost total loss of desire. The presence of two young kids and all the other things that are stacked against robust physical activity in a marriage after 16 years don't help either, but a major part of this has to be the meds. I'll be going to a Urologist at some point to see about the testosterone, which my dear friend Dr. Bill informs me can just as easily be delivered through a topical ointment (good enough for Barry Bonds, good enough for me) as an injection. Plus if I use enough of it, I'll get big muscles! We just have to make sure not to use too much or it can cause prostate cancer, which I've only recently been de-worried about. For those wondering, this is not a "purple pill" issue. It's more than there's no point carrying around a baseball bat if the concept of baseball is completely uninteresting to you.
- CONSTIPATION, when used with the Dex. I think this takes a while to build up. I didn't notice it until the third cycle of Dex last time. Then I started taking one Senna in the evenings for a few days, and when that didn't seem to be quite enough I added in a Docusan on two days. This was probably just a HAIR too much. No major disasters. But I think the key is to take Senna at the first sign of trouble (i.e. any day without a good, normal BM) and then do two a day on the Senna and one dose only of the Docusan. That should be enough. I'm continuing to fine-tune this approach and the reality is everyone's body is probably different so your mileage may vary.
- Deep vein thrombosis, when used with the Dex. I have had no issues but I highlight this because it is one of the dangerous side effects. I am taking one 81mg baby aspirin a day (down from two, given my relatively low platelet count) and I anticipate no problems. Of course, anticipating problems would keep all the excitement out of it! :)
* Velcade (1.97 m/m2, by infusion, each Tuesday)
- Count Suppression. No, this is not Dracula's totalitarian cousin. But it's covered above. Not sure how much of it is from Velcade versus Revlimid. BB had said that Revlimid it the major culprit, but since Velcade tells cells that they are ready to die, it has to get rid of some healthy cells as part of the collateral damage, and that probably means middle aged cells are dying a little early. It's like Logan's Run in my blood! Carousel! Carousel! Run, Logan!!!! (major 70s reference there -- and now you get the strange second half of this blog entry's title...or if not, imdb is just a mouse click away).
- Neuropathy. I had noticed the other day a tiny tingling in my feet, which was gone yesterday and today. Maybe I was imagining it, maybe it is so mild that it only lasts a day or two. Hard to say. Word on the street (this is where I get most of my clinical pharmaceutical information)** is that Velcade-induced neuropathy goes away when the treatment is stopped, unlike Thalidomide-induced neuropathy. I read from other people's blogs that Revlimid can indeed cause neuropathy as well; hopefully I will be lucky as it is certainly less of a problem from Rev than it is from Thal and I made it through six courses of Thal without problem. I am taking MetaNx every night when I am on Revlimid, and take a break from it when I stop for a week.
I had intended to write more, but this is already a monster post, so I'll follow up in a day or two with some other tidbits.
No news on the protein situation, though -- they only run those numbers once a month out here which is a little frustrating. I want to see that immunofixation test go back negative!!
Anyhow, thanks, as always, for your interest and support!!!
**This is sarcasm. I really only speak with members of the drug culture about particle physics.
* Dexamethasone Side Effects (20mg every Tuesday)
- Dex voice, usually comes on Tuesday afternoon and lasts through Wednesday, no real cure although Pantoprazole probably doesn't hurt
- Sleeplessness. Hits Tuesday night and runs at least through Wednesday night. Have been treating with use of Ambien. Usually slightly more effective on the second night than on the first. May need to treat with two glasses of red wine followed by Ambien, and make sure not to drink anything with caffeine on these days (I had three yesterday which probably didn't help the situation).
- Hunger. Sometimes, noticeable, other times not a big deal. It's almost like it locks in a constant level of hunger in your subconscious based on where your brain was at the time the dex kicks in (by my estimate yesterday, about 90 minutes after taking it). In the past, I have been starving at times -- like no matter how much I ate, my stomach was telling me I had no food in it. My brain was also not sending out "you're full, no need to eat messages." But yesterday, I was late taking the Dex (I usually do it first thing) and I had a Zone Bar (200 cals) and a couple of low-cal, high-fiber tortillas (this is a more lyrical way of saying I chewed on a thin disc made of sawdust -- the nutritional content outstrips the flavor). But this was very filling, and I took the Dex just before the two tortillas. I ate a light lunch and a light dinner, and I don't feel starving. My stomach, at least, feels sated. I could certainly eat more, but I don't have the constant ravenous feeling. So advice: consider taking Dex early in the day but definitely take with food. I notice that this is compliant with the dosing information as well. My brain is still playing tricks on me, and failing to send out the "you are full" signal that we usually get, but my stomach still feels somewhat full, so it's preventing me from eating everything in sight. This is a good trick to know.
- Weight gain. Not quite the same thing as hunger. I've noticed that I drink three liters of liquid a day and pee no more than half of this back out. This fluid retention was a real pain when I was on the high-dose pulses of Dex. I noticed it at bit last week on the Dex but I am hopeful that it will be manageable. I think I only gained about five points (not the twenty that I did in Little Rock on that last dose!) but it took almost a full week to be rid of it, and here I am back on the Dex now. I will keep tabs on this.
- Heartburn. I did not take Pantoprazole yesterday, but I did not get heartburn. I will take some this morning as a preventative. It may be that if you take it every other time, that's enough. For sure, my doc would tell me to take it every time (and probably every day) but the fewer pills I really need (and these are optional supportive care, not therapy) the better, is the way I look at it.
- Muscle atrophy. I notice it, still, but the two-times-a-week grueling physical therapy appears to be more than keeping it at bay, at this point. I see muscle definition improving throughout my body, which is a welcome relief. Even if I have to go to one day a week once work resumes, it should be enough to counteract the dex.
* Revlimid Side Effects (15mg / day, days 1-21 of 28 day cycle)
- Platelet suppression. Before maintenance my platelets were over 150. Last week they were 120. After a week off, they are back at 130. I don't know if they will continue to climb or if Revlimid will hit them immediately. It could be that 120 will be the "new normal" for the next three years, and that's not enough to have any real impact on me. If it gets below 100, then we have to start taking corrective action as it may interfere with Velcade administration (so said the nurse yesterday). So I'll continue to monitor this closely.
- Red blood count suppression. Before maintenance my Hemoglobin had climbed back to 14.7, fully healthy! In subsequent weeks it was 14.3 and then 13.5. I think (from memory) last week was 13.3. I then had my time off Revlimid, and yesterday's count was 14.7. So happily this one seems to bounce back fully during the week off. I will be pleased if it is able to do this regularly as having a good red blood count is essential to feeling good.
- White blood count suppression. I didn't think this was going to be an issue, as before maintenance I was either 5.3 or 5.5. Yesterday's blood count was 3.9. There remain a high percentage of young cells so it could be the system is still climbing, albeit in fits and starts and not helped by the Revlimid or Velcade, but 3.9 is starting to be disconcerting, especially during flu season. WASH YOUR HANDS, EVERYBODY!!! Below 3.0 and they will not want to provide Velcade, so let's hope this is a bottoming out. I REALLY DO NOT WANT MORE OF THAT DAMN NEUPOGEN!
- Mojo suppression. I've written about this before but I'll be more blunt now. There is an almost total loss of desire. The presence of two young kids and all the other things that are stacked against robust physical activity in a marriage after 16 years don't help either, but a major part of this has to be the meds. I'll be going to a Urologist at some point to see about the testosterone, which my dear friend Dr. Bill informs me can just as easily be delivered through a topical ointment (good enough for Barry Bonds, good enough for me) as an injection. Plus if I use enough of it, I'll get big muscles! We just have to make sure not to use too much or it can cause prostate cancer, which I've only recently been de-worried about. For those wondering, this is not a "purple pill" issue. It's more than there's no point carrying around a baseball bat if the concept of baseball is completely uninteresting to you.
- CONSTIPATION, when used with the Dex. I think this takes a while to build up. I didn't notice it until the third cycle of Dex last time. Then I started taking one Senna in the evenings for a few days, and when that didn't seem to be quite enough I added in a Docusan on two days. This was probably just a HAIR too much. No major disasters. But I think the key is to take Senna at the first sign of trouble (i.e. any day without a good, normal BM) and then do two a day on the Senna and one dose only of the Docusan. That should be enough. I'm continuing to fine-tune this approach and the reality is everyone's body is probably different so your mileage may vary.
- Deep vein thrombosis, when used with the Dex. I have had no issues but I highlight this because it is one of the dangerous side effects. I am taking one 81mg baby aspirin a day (down from two, given my relatively low platelet count) and I anticipate no problems. Of course, anticipating problems would keep all the excitement out of it! :)
* Velcade (1.97 m/m2, by infusion, each Tuesday)
- Count Suppression. No, this is not Dracula's totalitarian cousin. But it's covered above. Not sure how much of it is from Velcade versus Revlimid. BB had said that Revlimid it the major culprit, but since Velcade tells cells that they are ready to die, it has to get rid of some healthy cells as part of the collateral damage, and that probably means middle aged cells are dying a little early. It's like Logan's Run in my blood! Carousel! Carousel! Run, Logan!!!! (major 70s reference there -- and now you get the strange second half of this blog entry's title...or if not, imdb is just a mouse click away).
- Neuropathy. I had noticed the other day a tiny tingling in my feet, which was gone yesterday and today. Maybe I was imagining it, maybe it is so mild that it only lasts a day or two. Hard to say. Word on the street (this is where I get most of my clinical pharmaceutical information)** is that Velcade-induced neuropathy goes away when the treatment is stopped, unlike Thalidomide-induced neuropathy. I read from other people's blogs that Revlimid can indeed cause neuropathy as well; hopefully I will be lucky as it is certainly less of a problem from Rev than it is from Thal and I made it through six courses of Thal without problem. I am taking MetaNx every night when I am on Revlimid, and take a break from it when I stop for a week.
I had intended to write more, but this is already a monster post, so I'll follow up in a day or two with some other tidbits.
No news on the protein situation, though -- they only run those numbers once a month out here which is a little frustrating. I want to see that immunofixation test go back negative!!
Anyhow, thanks, as always, for your interest and support!!!
**This is sarcasm. I really only speak with members of the drug culture about particle physics.
Sunday, October 25, 2009
Where'd my energy go? And notes on a very nice lunch...
I'm pooped.
Two weeks ago, I felt great. My hemoglobin was 14.5 and didn't seem to be affected by the Revlimid, I was full of energy and felt like every day I was getting stronger.
The last four days or so, though, I've been very, very tired. Not quite like I was when I was recuperating from the transplants, but very tired. Nodding off on the couch sort of tired.
I don't know if this is a reaction from the maintenance therapy, or if I'm simply coming down with something that hasn't manifested fully yet. Frankly neither of those is a particularly appealing outcome. I'll get more bloodwork done on Tuesday and should have an idea if there is a clinical explanation like low red blood count. Hopefully it will have recovered because I start the second course of Revlimid that evening and whatever the blood has done to recover over the last seven days will have to be enough to sustain me for the next three weeks.
I am reminded that Kathy Giusti of the MMRF told me, when I first spoke with her shortly after my diagnosis, that "Revlimid is a very easy pill." Having said this, I sense that she was pleased to be off it when I had breakfast with her a few weeks ago.
Speaking of meals, I wanted to write a bit about a very nice lunch I had on Thursday with Les Bider, CEO of PinnacleCare.
Regular readers know that PinnacleCare (www.pinnaclecare.com) is a healthcare advocacy service that basically allows you to delegate a significant portion of your care -- everything from research to appointments to medical records to prescriptions -- and free up your time to focus on getting (or staying) healthy. I'm probably understating the range of their services, but in my instance they have been very helpful from a practical standpoint, and also immensely supportive. I think i wrote here about the care package they sent me in the hospital, including handwritten notes from employees with relatives that had beaten blood cancer, a spiffy T-shirt that read "Cancer Sucks" and which I wore with pride in the transplant clinic, and candy that appears to have been consumed by my caregiver while I was in my Dilaudid coma. :)
Anyhow, Les was in Los Angeles for a few days and invited me to lunch to talk about my situation, my experience with his company, and the fact that we have probably almost crossed professional paths half a dozen times in the past ten years (his background prior to PinnacleCare is in media and private equity). We had a very nice conversation and I look forward to continuing our dialogue. I think it's a pretty remarkable thing for a company's CEO to take time out to meet with customers, let alone to have a good knowledge of that particular customer's health situation. PinnacleCare is not inexpensive, but I have found them very helpful and while I hope nobody reading this is facing a health situation like mine was a year ago, if any of you are, you should look into this company -- they can add more energy and resources to your fight and they are truly kind people.
Okay...I'm gonna try to get some rest now. I've been up since 2AM and it's 5:30AM now. Hard to say why I can't sleep at night but am exhausted during the day...haven't had Dex in six days so that can't be it....
Grrrr....yawn.....zzzzz......
Two weeks ago, I felt great. My hemoglobin was 14.5 and didn't seem to be affected by the Revlimid, I was full of energy and felt like every day I was getting stronger.
The last four days or so, though, I've been very, very tired. Not quite like I was when I was recuperating from the transplants, but very tired. Nodding off on the couch sort of tired.
I don't know if this is a reaction from the maintenance therapy, or if I'm simply coming down with something that hasn't manifested fully yet. Frankly neither of those is a particularly appealing outcome. I'll get more bloodwork done on Tuesday and should have an idea if there is a clinical explanation like low red blood count. Hopefully it will have recovered because I start the second course of Revlimid that evening and whatever the blood has done to recover over the last seven days will have to be enough to sustain me for the next three weeks.
I am reminded that Kathy Giusti of the MMRF told me, when I first spoke with her shortly after my diagnosis, that "Revlimid is a very easy pill." Having said this, I sense that she was pleased to be off it when I had breakfast with her a few weeks ago.
Speaking of meals, I wanted to write a bit about a very nice lunch I had on Thursday with Les Bider, CEO of PinnacleCare.
Regular readers know that PinnacleCare (www.pinnaclecare.com) is a healthcare advocacy service that basically allows you to delegate a significant portion of your care -- everything from research to appointments to medical records to prescriptions -- and free up your time to focus on getting (or staying) healthy. I'm probably understating the range of their services, but in my instance they have been very helpful from a practical standpoint, and also immensely supportive. I think i wrote here about the care package they sent me in the hospital, including handwritten notes from employees with relatives that had beaten blood cancer, a spiffy T-shirt that read "Cancer Sucks" and which I wore with pride in the transplant clinic, and candy that appears to have been consumed by my caregiver while I was in my Dilaudid coma. :)
Anyhow, Les was in Los Angeles for a few days and invited me to lunch to talk about my situation, my experience with his company, and the fact that we have probably almost crossed professional paths half a dozen times in the past ten years (his background prior to PinnacleCare is in media and private equity). We had a very nice conversation and I look forward to continuing our dialogue. I think it's a pretty remarkable thing for a company's CEO to take time out to meet with customers, let alone to have a good knowledge of that particular customer's health situation. PinnacleCare is not inexpensive, but I have found them very helpful and while I hope nobody reading this is facing a health situation like mine was a year ago, if any of you are, you should look into this company -- they can add more energy and resources to your fight and they are truly kind people.
Okay...I'm gonna try to get some rest now. I've been up since 2AM and it's 5:30AM now. Hard to say why I can't sleep at night but am exhausted during the day...haven't had Dex in six days so that can't be it....
Grrrr....yawn.....zzzzz......
Friday, October 23, 2009
Sad comments from a new friend, and more reflections on control versus eradicate
I received an email yesterday and I wanted to share some of it as it affected me rather profoundly. I've edited it as appropriate to preserve the Myeloma content and not the rest of it.
I was so sad to hear of this young man's story, and his father's story. And I am moved to comment, perhaps more strongly than I have before, on the different approaches to battling this disease.
I have been corresponding of late with a terrific man, Pat Killingsworth, who has taken a different approach to his Myeloma in terms of treatment, but who has the same approach in terms of sharing his experiences in the hopes of helping others. His blog can be found at www.multiplemyelomablog.com, for those who are interested.
Now as I said...Pat's approach is quite different than mine. He described it to me as "stick and move...live to fight another day" and put off serious treatment such as a stem cell transplant until such time as his current remission (created from radiation and thal/dex, I believe) lapses. Pat's approach is very cautious, where mine has been to charge ahead full steam. In full disclosure, I remember when I was getting a blood transfusion a few months ago I happened upon Pat's blog that day -- before I knew him -- and it coincidentally had all the dangers of blood transfusions listed! :) I remember writing that one can go crazy from thinking through all the many things that COULD happen from these other treatments. But at the time, the one certainty was that I was severely anemic and felt terrible, and getting a unit or two of blood would make a big difference.
Pat notes in his review of Total Therapy on his blog from a couple of weeks ago that Myeloma treatment is guesswork -- I'm not sure I agree 100% with that, but I know where he is coming from. But I DO know that in many, many cases, the decision to "live with the disease" is tantamount to the decision to "die from the disease."
JB, he of the anti-transplant bent, obviously treated the man whose son wrote to me. A man who at age 46 was diagnosed, who never underwent a transplant, and who five years later is dead. From the flu. A man who was, if I may infer from the letter, unable to live life to the fullest except in snatches here or there when his numbers were good.
JD -- the man with whom I had dinner the other night -- if you are reading this, please carefully consider that letter. Consider what happens if you don't take the aggressive approach. Is Total Therapy right for everybody? No. 15-20% of newly diagnosed people do not respond well to it. If you have been treated before, you won't benefit as much from it. If you are old and have other illnesses or are in poor health, it can be overwhelming.
But for a young, otherwise healthy, newly diagnosed patient, I truly believe: you stand the best chance of being cured from it and resuming a normal life than from any other treatment alternative available at this time.
Take the fight to Myeloma. Kill it before it kills you.
I am so sorry to hear of what you have undergone in the past year. My dad has battled Multiple Myeloma for almost 5 years now. Unfortunately, he passed away this past Tuesday morning after being infected with the flu, which bridged over into pneumonia. He was only 51 years old. I’m 25. Your experiences sound very similar from all that I have read.
My dad always made it a point to stay out of public areas during the flu season. This year, as his health waned, we decided it would be good for him to get out of the house. But I guess something got past his immune system. As you know, quality of life is a complex topic. Should you stay in and not take any chances, yet not fully living? Or should you go out and live your life to the fullest, yet still taking health risks?
Here’s what I found: when my dad’s numbers were good, he was able to live a relatively normal life. We went out to eat. We went to concerts. We even made a CD together. He and I are both musicians and I’m so happy we were able to do what we did...it was the only time my dad was truly pain-free. I told my dad your story about a month ago. I told him about the stem-cell transplants and such. He never underwent the procedure, but when I told him that it had seemed to work for you he said to me, “I’ll do anything it takes. I want to survive.”
One more thing, Dr. JB [Nick's note: the same JB that I've written about here as the anti-transplant guy] is one of the leading doctors in Myeloma and Bone Cancer Research...He was very comforting to my dad and if you need any more doctors’ support, he may be of great comfort to you as well.
I was so sad to hear of this young man's story, and his father's story. And I am moved to comment, perhaps more strongly than I have before, on the different approaches to battling this disease.
I have been corresponding of late with a terrific man, Pat Killingsworth, who has taken a different approach to his Myeloma in terms of treatment, but who has the same approach in terms of sharing his experiences in the hopes of helping others. His blog can be found at www.multiplemyelomablog.com, for those who are interested.
Now as I said...Pat's approach is quite different than mine. He described it to me as "stick and move...live to fight another day" and put off serious treatment such as a stem cell transplant until such time as his current remission (created from radiation and thal/dex, I believe) lapses. Pat's approach is very cautious, where mine has been to charge ahead full steam. In full disclosure, I remember when I was getting a blood transfusion a few months ago I happened upon Pat's blog that day -- before I knew him -- and it coincidentally had all the dangers of blood transfusions listed! :) I remember writing that one can go crazy from thinking through all the many things that COULD happen from these other treatments. But at the time, the one certainty was that I was severely anemic and felt terrible, and getting a unit or two of blood would make a big difference.
Pat notes in his review of Total Therapy on his blog from a couple of weeks ago that Myeloma treatment is guesswork -- I'm not sure I agree 100% with that, but I know where he is coming from. But I DO know that in many, many cases, the decision to "live with the disease" is tantamount to the decision to "die from the disease."
JB, he of the anti-transplant bent, obviously treated the man whose son wrote to me. A man who at age 46 was diagnosed, who never underwent a transplant, and who five years later is dead. From the flu. A man who was, if I may infer from the letter, unable to live life to the fullest except in snatches here or there when his numbers were good.
JD -- the man with whom I had dinner the other night -- if you are reading this, please carefully consider that letter. Consider what happens if you don't take the aggressive approach. Is Total Therapy right for everybody? No. 15-20% of newly diagnosed people do not respond well to it. If you have been treated before, you won't benefit as much from it. If you are old and have other illnesses or are in poor health, it can be overwhelming.
But for a young, otherwise healthy, newly diagnosed patient, I truly believe: you stand the best chance of being cured from it and resuming a normal life than from any other treatment alternative available at this time.
Take the fight to Myeloma. Kill it before it kills you.
Thursday, October 22, 2009
Side effects and other updates, plus the joy of giving back
Howdy folks. Time for an update.
I went in for my weekly Velcade on Tuesday, and then back to the same office to visit with Dr. GD yesterday.
The Velcade infusion went smoothly -- I've gotten it down, knock on wood, with this portacath now. I use something called Emla cream, which is a topical solution squeezed out of a tube that is basically Lidocaine. I smear this goop on pretty thick and then cover it with good ol' fashioned saran wrap, like the kind I used to use in Little Rock while showering. I do this about 90 minutes before I arrive at the doctor's office. Then when they get me in the infusion chair, they remove this and spray a very cold ice spray on it to further numb it. This is something they cannot do in a hospital, I am told, as the icy solution used to be flammable and even though it no longer is, most hospitals still have protocol against using it.
I've had the ice spray without the Emla cream before and I can tell you, it's bloody cold and it stings! The Emla cream makes this unnoticeable. So I know that it's working.
By the time I've been flash-frozen, inserting the needle consists of a tiny amount of pressure for an instant, and no pain or discomfort beyond that. Similarly, removal of the IV is very simple as well.
So at this point in time, I am glad I got the portacath. There is the ugly scar and a bump under the chest but it's not the end of the world and I don't think I need to have it relocated to the other side or removed. I've had the painful one accessed twice and the less painful one accessed three times, and they have all been without event. Next Tuesday is the painful one again, and if it can be done as easy as last time, I will pronounce things a-ok.
I was anxious to see labs with some protein information in them to see if the immunofixation test is negative, but alas all they had for me was CBC (complete blood count) from the previous week. Of note, WBC was holding at 5 and change, HGB was at 14.3, down a tick from 14.5 but still good, and platelets were 127. Low, but not as low as I might have feared. That bruise on my left arm is still there -- I think it is simply from one part of physical therapy, where I prop my body up on alternative forearms and use that to support my entire weight by lifting my hips up off the ground. This applies pressure to the forearm and is the only thing I can think of that would have caused the bruising.
At any rate, I went to GD yesterday armed (har har) with this and other questions. And I did get the results of this weeks CBD, which showed a dip in WBC, HGB and platelets to 4.9, 13.3 and 123 respectively. Boooo....especially HGB as I was enjoying not being anemic. Anyhow, highlights of the conversation with GD:
1., The reading from the immunofixation test is of no consequence, evidently. He was very dismissive of it, and said it was absolutely nothing to think about. We will watch it, he says, and see if it increases but as of now, it's nothing. Now...this is not something I wanted to hear. It is another half-answer and it doesn't satisfy me. I have resolved that I will need to speak with BB about it in January once we have a bit more data. But what I want to know are very specific answers to very specific questions, with supporting information. Maybe I just need to "train Dr. GD" (to use the words of our friend and fellow traveler LP) -- I am not the typical patient satisfied with a glib response. I want to know things like:
a. Does this mean I never achieved true complete remission, or is this noise within the test acceptable in the complete remission category? And if the latter is true, is there a more stringent complete remission that I should hope to achieve?
b. More to the point, does the presence of a faint monoclonal band even indicate myeloma, or in the context of the oligoclonal bands observed elsewhere in the spectrum is it a sign of either treatment or normal protein functionality?
c. How long can I expect the numbers to bounce around before we lock down into a permanent negative state, assuming we want and expect to see that as a sign of favorable response to treatment?
d. At what point should I become concerned -- NOT when the protein comes up, but if, for example, we find faint monoclonal bands each month for six months, etc.
e. What percent of the general population would have this feature in their blood -- clearly it would exist without so much as a diagnosis of MGUS since there is such a microscopic amount of m-protein that it wouldn't show up under SPEP, let alone less stringest tests like the original total protein analysis that my primary care Dr. PZ caught about a year ago to this day. And is there a chance (and if so, what chance) that I've always had this, and if so what does that mean vis-a-vis my Myeloma? Are they unrelated or is it back to a dormant state, etc.
2. I was excited to have briefly dipped below the 13 stone threshold, down to 12 stone 13 and a half! On my way! And yet I've noticed that post-my Dex on Tuesday, I've gained about five pounds back (three as of the doctor's visit). Most of this, if not all, is water weight as I've been drinking lots of water and haven't peed much. Mild constpiation may also be an issue -- I've got lunch today with the CEO of PinnacleCare followed by golf and I don't particularly want to "prime the pump" for an unexpected bathroom visit so I'll probably wait until this evening to dose up but I'm not going to let it go past tonight.
3. The weight gain from the Dex is also influencing, to a degree, my blood pressure, which was a lovely 116/71 (thank you, Revlimid!) on Tuesday but 133/83 on Wednesday. I asked the doctor if he concurred that this, the weight gain, and the drop in hemoglobin from 14.3 to 13.5 were as a result of water retention from the dex and he believed it was. Hurray for Nick the amateur hematologist! Now if only I could pee....
4. Dex causes insomnia even after it is done being taken. I took Ambien on Dex day and again last night. Both times I was able to manage only about six hours, which means I wake up groggy. Still, this is better than not sleeping. I will take one more Ambien tonight. I don't like taking three a week of them but they are supposed to be non-addictive. We shall see. (ed. note: Well, I just saw, courtesy of a Google Search for "is Ambien addictive?" Turns out it is. Maybe two nights a week is all I shall use it for...I'm yawning as I type at 5:45AM, so hopefully tonight I'll be out like a light).
5. Dex causes esophageal problems (e.g. "Dex voice") for a couple of days at least. I took Pantoprazole on the morning of the Dex and again yesterday and have had no heartburn. I am not going to take it today, and see what happens. I want to be on as few of these supportive care drugs as possible.
6. I finished my first 21-day cycle of Revlimid without any side effects to speak of, really. I sometimes notice a tiny bit of tingling in my feet but it's really nothing to speak of...barely noticeable and absent most of the time. It's probably got nothing to do with anything. But I do take MetaNx once a day and I may double up just to be safe. Any neuropathy I get at this point is probably from the Velcade and would be reversible, and I don't really have anything to be worried about at this point. Certainly nothing anywhere near the feeling I would have of my foot being asleep, certainly. The Revlimid did, though, as expected, bring down blood counts. I was surprised the HGB held up as well as it has. Hopefully the 7 days off will allow these counts to go back up before they get hit again for the next cycle.
7. Like its cousin Thalidomide, Revlimid does completely eliminate the desire to "multiply" (in the sense of Genesis Chapter 1). Now that my PSA tests came back very, very low (meaning there is no risk of prostate cancer) I am free to receive the BB-suggested shots of testosterone. Who knows if this will have any effect but it can't hurt my physical therapy as well as my mojo, as I was referred to a urologist by Dr. GD for the shots.
8. GD did not think the bruising on my arm was from platelets and that the platelets, while barely in the normal range, are acceptable. I had called Arkansas to suggest going from 2 aspirin a day down to 1, and they agreed. GD concurred with this. So for now, I reduce the Aspirin intake a bit and watch. I do think the bruising on my arm is from the platelets -- it's not like I banged my arm anyplace. But we'll see.
9. BB had ordered every week complete blood panels, CRP, liver numbers, protein SPEP and immunofixation, etc. GD flat out refused, saying it was too much. He would do it every other week. This seemed acceptable to me, although I must admit I was a bit irritated that he wouldn't simply follow BB's orders.
This is a good segue to another discussion I had with LP, she of the "training the doctor" quote above. LP's husband D was diagnosed and previously treated for some time before going to Arkansas to go through Total Therapy 6 (the code for double-transplant candidates who had previous been treated elsewhere). D is doing great, and they have returned home to enter maintenance. The doctor they selected, like my own SH, is I'm sure a good hematologist but he doesn't believe in maintenance and he was dismissive of BB's protocol. My suggestion to LP, which is where I came out as well, is to find another doctor. You have chosen a therapy not at random: it's the one that you believe will give you the best chance of beating the disease. I am obviously big on learning as much as I can, and I like to control what I can, but at some point you have to trust the doctor and a sense of trust is critical -- as faithful readers have seen in my own blog -- to making it through those inevitable times when the numbers aren't what you want to see. You have to have faith in the protocol and in the doctor in order to keep your positive attitude. So if the maintenance physician is muttering under his breath or shaking his head reading the followup instructions from BB (and even SF, a fan of BB's, said the instructions were "a bit on the imperious side") it's not going to be conducive to the strongest psychological approach.
GD's irritation with BB's weekly run of tests -- and his incomplete answers about my immunofixation situation -- was enough to rub me the wrong way, actually, but as he is generally with the program I'll stick with him.
So anyhow, that was my free advice for LP. I was also fortunate enough to meet with a newly diagnosed patient, who wants to keep himself private so we'll call him JD, after his profession. He's my age and in Los Angeles. I spoke with him for perhaps half an hour on Tuesday night, and last night we met over dinner for two hours.
He said he'd found my blog and had been reading it and found it helpful -- take THAT, Brother Ted! :) Anyhow, meeting this gentleman in essentially my own situation (he is in stage 1, has not begun treatment yet, is evaluating his options, etc.) about one year removed is a remarkable thing and it gives me the rarified feeling of almost looking back through time and trying to help myself. I've taken a keen interest in JD's well-being and I plan on being a resource to him for anything he needs at this time. Diagnosis is frightening, and his questions were very well informed -- in part from my blog, which is in itself quite rewarding as my goal all along has been to help people that are going through diagnosis and treatment by giving the non-white-washed version of everything.
JD has a lower M-protein than I did on diagnosis (he is 3.3 versus my 4.1) and importantly his bone marrow is only 20-25% plasma cells where mine was 70% or so. My initial advice was for him to do research, live his life, take his planned vacation, spend time with his young son, figure out what he wants to do...and then go for it. He's considering treatment locally and I suggested that he meet with SF out of City of Hope, but I am not shy about suggesting BB as the place to go.
Bart's data shows, as of earlier this year in a presentation to ASCO, a 74% cure rate for low-risk patients in Total Therapy 3. And that includes patients that have not achieved complete remission (recall that achieving complete remission increases the likelihood of sustained event-free survival by about 25%). Combining these statistics seems to suggest -- and I'm not being totally scientific here as they come from two different data sets but they are nonetheless related -- but it seems to suggest that the cure rate for people achieving complete remission EXCEEDS 90%.
This in a world where nobody else will even suggest that the disease is curable.
For a young, healthy man like JD, Arkansas is the place to go. It's a sixth month inconvenience. It is an unpleasant experience. But it will most likely save his life.
And in the meantime, I am here for anything he needs. I was so thankful for the opportunity to speak with him and I look forward to being a resource to him and others going forward.
And with that, I bid you kind folks adieu for another few days.
I went in for my weekly Velcade on Tuesday, and then back to the same office to visit with Dr. GD yesterday.
The Velcade infusion went smoothly -- I've gotten it down, knock on wood, with this portacath now. I use something called Emla cream, which is a topical solution squeezed out of a tube that is basically Lidocaine. I smear this goop on pretty thick and then cover it with good ol' fashioned saran wrap, like the kind I used to use in Little Rock while showering. I do this about 90 minutes before I arrive at the doctor's office. Then when they get me in the infusion chair, they remove this and spray a very cold ice spray on it to further numb it. This is something they cannot do in a hospital, I am told, as the icy solution used to be flammable and even though it no longer is, most hospitals still have protocol against using it.
I've had the ice spray without the Emla cream before and I can tell you, it's bloody cold and it stings! The Emla cream makes this unnoticeable. So I know that it's working.
By the time I've been flash-frozen, inserting the needle consists of a tiny amount of pressure for an instant, and no pain or discomfort beyond that. Similarly, removal of the IV is very simple as well.
So at this point in time, I am glad I got the portacath. There is the ugly scar and a bump under the chest but it's not the end of the world and I don't think I need to have it relocated to the other side or removed. I've had the painful one accessed twice and the less painful one accessed three times, and they have all been without event. Next Tuesday is the painful one again, and if it can be done as easy as last time, I will pronounce things a-ok.
I was anxious to see labs with some protein information in them to see if the immunofixation test is negative, but alas all they had for me was CBC (complete blood count) from the previous week. Of note, WBC was holding at 5 and change, HGB was at 14.3, down a tick from 14.5 but still good, and platelets were 127. Low, but not as low as I might have feared. That bruise on my left arm is still there -- I think it is simply from one part of physical therapy, where I prop my body up on alternative forearms and use that to support my entire weight by lifting my hips up off the ground. This applies pressure to the forearm and is the only thing I can think of that would have caused the bruising.
At any rate, I went to GD yesterday armed (har har) with this and other questions. And I did get the results of this weeks CBD, which showed a dip in WBC, HGB and platelets to 4.9, 13.3 and 123 respectively. Boooo....especially HGB as I was enjoying not being anemic. Anyhow, highlights of the conversation with GD:
1., The reading from the immunofixation test is of no consequence, evidently. He was very dismissive of it, and said it was absolutely nothing to think about. We will watch it, he says, and see if it increases but as of now, it's nothing. Now...this is not something I wanted to hear. It is another half-answer and it doesn't satisfy me. I have resolved that I will need to speak with BB about it in January once we have a bit more data. But what I want to know are very specific answers to very specific questions, with supporting information. Maybe I just need to "train Dr. GD" (to use the words of our friend and fellow traveler LP) -- I am not the typical patient satisfied with a glib response. I want to know things like:
a. Does this mean I never achieved true complete remission, or is this noise within the test acceptable in the complete remission category? And if the latter is true, is there a more stringent complete remission that I should hope to achieve?
b. More to the point, does the presence of a faint monoclonal band even indicate myeloma, or in the context of the oligoclonal bands observed elsewhere in the spectrum is it a sign of either treatment or normal protein functionality?
c. How long can I expect the numbers to bounce around before we lock down into a permanent negative state, assuming we want and expect to see that as a sign of favorable response to treatment?
d. At what point should I become concerned -- NOT when the protein comes up, but if, for example, we find faint monoclonal bands each month for six months, etc.
e. What percent of the general population would have this feature in their blood -- clearly it would exist without so much as a diagnosis of MGUS since there is such a microscopic amount of m-protein that it wouldn't show up under SPEP, let alone less stringest tests like the original total protein analysis that my primary care Dr. PZ caught about a year ago to this day. And is there a chance (and if so, what chance) that I've always had this, and if so what does that mean vis-a-vis my Myeloma? Are they unrelated or is it back to a dormant state, etc.
2. I was excited to have briefly dipped below the 13 stone threshold, down to 12 stone 13 and a half! On my way! And yet I've noticed that post-my Dex on Tuesday, I've gained about five pounds back (three as of the doctor's visit). Most of this, if not all, is water weight as I've been drinking lots of water and haven't peed much. Mild constpiation may also be an issue -- I've got lunch today with the CEO of PinnacleCare followed by golf and I don't particularly want to "prime the pump" for an unexpected bathroom visit so I'll probably wait until this evening to dose up but I'm not going to let it go past tonight.
3. The weight gain from the Dex is also influencing, to a degree, my blood pressure, which was a lovely 116/71 (thank you, Revlimid!) on Tuesday but 133/83 on Wednesday. I asked the doctor if he concurred that this, the weight gain, and the drop in hemoglobin from 14.3 to 13.5 were as a result of water retention from the dex and he believed it was. Hurray for Nick the amateur hematologist! Now if only I could pee....
4. Dex causes insomnia even after it is done being taken. I took Ambien on Dex day and again last night. Both times I was able to manage only about six hours, which means I wake up groggy. Still, this is better than not sleeping. I will take one more Ambien tonight. I don't like taking three a week of them but they are supposed to be non-addictive. We shall see. (ed. note: Well, I just saw, courtesy of a Google Search for "is Ambien addictive?" Turns out it is. Maybe two nights a week is all I shall use it for...I'm yawning as I type at 5:45AM, so hopefully tonight I'll be out like a light).
5. Dex causes esophageal problems (e.g. "Dex voice") for a couple of days at least. I took Pantoprazole on the morning of the Dex and again yesterday and have had no heartburn. I am not going to take it today, and see what happens. I want to be on as few of these supportive care drugs as possible.
6. I finished my first 21-day cycle of Revlimid without any side effects to speak of, really. I sometimes notice a tiny bit of tingling in my feet but it's really nothing to speak of...barely noticeable and absent most of the time. It's probably got nothing to do with anything. But I do take MetaNx once a day and I may double up just to be safe. Any neuropathy I get at this point is probably from the Velcade and would be reversible, and I don't really have anything to be worried about at this point. Certainly nothing anywhere near the feeling I would have of my foot being asleep, certainly. The Revlimid did, though, as expected, bring down blood counts. I was surprised the HGB held up as well as it has. Hopefully the 7 days off will allow these counts to go back up before they get hit again for the next cycle.
7. Like its cousin Thalidomide, Revlimid does completely eliminate the desire to "multiply" (in the sense of Genesis Chapter 1). Now that my PSA tests came back very, very low (meaning there is no risk of prostate cancer) I am free to receive the BB-suggested shots of testosterone. Who knows if this will have any effect but it can't hurt my physical therapy as well as my mojo, as I was referred to a urologist by Dr. GD for the shots.
8. GD did not think the bruising on my arm was from platelets and that the platelets, while barely in the normal range, are acceptable. I had called Arkansas to suggest going from 2 aspirin a day down to 1, and they agreed. GD concurred with this. So for now, I reduce the Aspirin intake a bit and watch. I do think the bruising on my arm is from the platelets -- it's not like I banged my arm anyplace. But we'll see.
9. BB had ordered every week complete blood panels, CRP, liver numbers, protein SPEP and immunofixation, etc. GD flat out refused, saying it was too much. He would do it every other week. This seemed acceptable to me, although I must admit I was a bit irritated that he wouldn't simply follow BB's orders.
This is a good segue to another discussion I had with LP, she of the "training the doctor" quote above. LP's husband D was diagnosed and previously treated for some time before going to Arkansas to go through Total Therapy 6 (the code for double-transplant candidates who had previous been treated elsewhere). D is doing great, and they have returned home to enter maintenance. The doctor they selected, like my own SH, is I'm sure a good hematologist but he doesn't believe in maintenance and he was dismissive of BB's protocol. My suggestion to LP, which is where I came out as well, is to find another doctor. You have chosen a therapy not at random: it's the one that you believe will give you the best chance of beating the disease. I am obviously big on learning as much as I can, and I like to control what I can, but at some point you have to trust the doctor and a sense of trust is critical -- as faithful readers have seen in my own blog -- to making it through those inevitable times when the numbers aren't what you want to see. You have to have faith in the protocol and in the doctor in order to keep your positive attitude. So if the maintenance physician is muttering under his breath or shaking his head reading the followup instructions from BB (and even SF, a fan of BB's, said the instructions were "a bit on the imperious side") it's not going to be conducive to the strongest psychological approach.
GD's irritation with BB's weekly run of tests -- and his incomplete answers about my immunofixation situation -- was enough to rub me the wrong way, actually, but as he is generally with the program I'll stick with him.
So anyhow, that was my free advice for LP. I was also fortunate enough to meet with a newly diagnosed patient, who wants to keep himself private so we'll call him JD, after his profession. He's my age and in Los Angeles. I spoke with him for perhaps half an hour on Tuesday night, and last night we met over dinner for two hours.
He said he'd found my blog and had been reading it and found it helpful -- take THAT, Brother Ted! :) Anyhow, meeting this gentleman in essentially my own situation (he is in stage 1, has not begun treatment yet, is evaluating his options, etc.) about one year removed is a remarkable thing and it gives me the rarified feeling of almost looking back through time and trying to help myself. I've taken a keen interest in JD's well-being and I plan on being a resource to him for anything he needs at this time. Diagnosis is frightening, and his questions were very well informed -- in part from my blog, which is in itself quite rewarding as my goal all along has been to help people that are going through diagnosis and treatment by giving the non-white-washed version of everything.
JD has a lower M-protein than I did on diagnosis (he is 3.3 versus my 4.1) and importantly his bone marrow is only 20-25% plasma cells where mine was 70% or so. My initial advice was for him to do research, live his life, take his planned vacation, spend time with his young son, figure out what he wants to do...and then go for it. He's considering treatment locally and I suggested that he meet with SF out of City of Hope, but I am not shy about suggesting BB as the place to go.
Bart's data shows, as of earlier this year in a presentation to ASCO, a 74% cure rate for low-risk patients in Total Therapy 3. And that includes patients that have not achieved complete remission (recall that achieving complete remission increases the likelihood of sustained event-free survival by about 25%). Combining these statistics seems to suggest -- and I'm not being totally scientific here as they come from two different data sets but they are nonetheless related -- but it seems to suggest that the cure rate for people achieving complete remission EXCEEDS 90%.
This in a world where nobody else will even suggest that the disease is curable.
For a young, healthy man like JD, Arkansas is the place to go. It's a sixth month inconvenience. It is an unpleasant experience. But it will most likely save his life.
And in the meantime, I am here for anything he needs. I was so thankful for the opportunity to speak with him and I look forward to being a resource to him and others going forward.
And with that, I bid you kind folks adieu for another few days.
Saturday, October 17, 2009
Ouch: A catalog of aches and pains, sympathetic and otherwise
Happy Sunday, folks.
A quick run-down of a few things.
* I'm starting to see some side effects from the Revlimid. I'd been noting platelets counts were falling, but yesterday the wife noticed I had a large bruise on my arm -- nine inches long by a couple of inches wide. Not pitch-black, but definitely discolored. I have three more days of Revlimid this cycle and I'll then have a week for the counts to try to recover, but I will speak with GD about this to make sure things aren't hinky. One possibility would be to discontinue or reduce the dosage of aspirin -- it doesn't look like my blood needs to be any thinner.
* I am in a massive amount of the good kind of muscle pain after a strenuous physical therapy session on Thursday. Two days later and it still hurts. I'm pleasantly surprised by the response of my muscles to only a few sessions -- I'm already seeing the return of some definition. Strength and stamina will hopefully follow hand-in-hand but it's nice to see tangible evidence that I'm battling the dex-induced atropthy.
* In correspondence with our friend and fellow patient PB and his darling wife C, who are going through an anti-myeloma program in Michigan that sounds similar in concept to Arkansas if not in the specific regimen, I was sorry to see that the ol' constipation issue isn't just in reaction to the cocktail prescribed in Little Rock. P went to the ER same as I did. It's a sad coincidence that Revlimid had a pretty nasty impact on me in this area, too. Fortunately, I noticed it in time and started taking Senna and Docusate. The problem has now resolved, but it is another reminder: these immunomodulatory drugs do cause things to stop working in the GI department. For those going through this therapy, keep close tabs on this so it doesn't get out of control!
On the subject of others suffering from this disease, I also want to note that I heard yesterday from MH, a gentleman from the greater Los Angeles area who went to Little Rock with his wife so that she could be treated for Myeloma. This is a very sad story, but it's germane. While there is a lot of hope for this disease -- whether through Total Therapy's goal of eradicating it, or through new drugs which may hold promise for those choosing to control rather than eliminate the disease -- this is still a killer.
MH's wife was treated initially by Dr. JB, a prominent Myeloma specialist who is opposed to transplants. He represents the opposite end of the spectrum from BB, and the two are not exactly pals. JB treated MH's wife for approximately six months, and her condition worsened. She did not respond to the therapies. MH asked questions and was dissatisfied with JB's answers. When his wife took ill, she went into the care of Dr. RV, another prominent Myeloma specialist out here. I believe RV did one transplant almost immediately, since the poor lady was in very bad health. MH credits this procedure with saving her life at the time. However a few months later, her Myeloma was back, and RV referred her to BB since the Myeloma was advanced and BB's shop is often the place of last resort.
To make a long and very tragic story short, MH's lovely wife was so ill by the time she arrived in Little Rock that even an injection of Lovenox caused tumors to appear instantaneously at the site of the injections. There was nothing that could be done. MH's wife succumbed to Myeloma just a few weeks after her arrival in Little Rock.
Speaking with MH yesterday reminded me once again how fortunate I am that I was diagnosed early, that I had time to research the disease, and that my therapy has gone according to plan. There are many others for whom this disease is an even worse diagnosis, and while I am a big believer in Total Therapy there are those (about 20%) who do not respond to any treatment whatsoever, whether transplant-related or novel-drug related. My thoughts and prayers are with MH and his wife, and with the patients and families whose disease is in a more dangerous stage than my own.
A quick run-down of a few things.
* I'm starting to see some side effects from the Revlimid. I'd been noting platelets counts were falling, but yesterday the wife noticed I had a large bruise on my arm -- nine inches long by a couple of inches wide. Not pitch-black, but definitely discolored. I have three more days of Revlimid this cycle and I'll then have a week for the counts to try to recover, but I will speak with GD about this to make sure things aren't hinky. One possibility would be to discontinue or reduce the dosage of aspirin -- it doesn't look like my blood needs to be any thinner.
* I am in a massive amount of the good kind of muscle pain after a strenuous physical therapy session on Thursday. Two days later and it still hurts. I'm pleasantly surprised by the response of my muscles to only a few sessions -- I'm already seeing the return of some definition. Strength and stamina will hopefully follow hand-in-hand but it's nice to see tangible evidence that I'm battling the dex-induced atropthy.
* In correspondence with our friend and fellow patient PB and his darling wife C, who are going through an anti-myeloma program in Michigan that sounds similar in concept to Arkansas if not in the specific regimen, I was sorry to see that the ol' constipation issue isn't just in reaction to the cocktail prescribed in Little Rock. P went to the ER same as I did. It's a sad coincidence that Revlimid had a pretty nasty impact on me in this area, too. Fortunately, I noticed it in time and started taking Senna and Docusate. The problem has now resolved, but it is another reminder: these immunomodulatory drugs do cause things to stop working in the GI department. For those going through this therapy, keep close tabs on this so it doesn't get out of control!
On the subject of others suffering from this disease, I also want to note that I heard yesterday from MH, a gentleman from the greater Los Angeles area who went to Little Rock with his wife so that she could be treated for Myeloma. This is a very sad story, but it's germane. While there is a lot of hope for this disease -- whether through Total Therapy's goal of eradicating it, or through new drugs which may hold promise for those choosing to control rather than eliminate the disease -- this is still a killer.
MH's wife was treated initially by Dr. JB, a prominent Myeloma specialist who is opposed to transplants. He represents the opposite end of the spectrum from BB, and the two are not exactly pals. JB treated MH's wife for approximately six months, and her condition worsened. She did not respond to the therapies. MH asked questions and was dissatisfied with JB's answers. When his wife took ill, she went into the care of Dr. RV, another prominent Myeloma specialist out here. I believe RV did one transplant almost immediately, since the poor lady was in very bad health. MH credits this procedure with saving her life at the time. However a few months later, her Myeloma was back, and RV referred her to BB since the Myeloma was advanced and BB's shop is often the place of last resort.
To make a long and very tragic story short, MH's lovely wife was so ill by the time she arrived in Little Rock that even an injection of Lovenox caused tumors to appear instantaneously at the site of the injections. There was nothing that could be done. MH's wife succumbed to Myeloma just a few weeks after her arrival in Little Rock.
Speaking with MH yesterday reminded me once again how fortunate I am that I was diagnosed early, that I had time to research the disease, and that my therapy has gone according to plan. There are many others for whom this disease is an even worse diagnosis, and while I am a big believer in Total Therapy there are those (about 20%) who do not respond to any treatment whatsoever, whether transplant-related or novel-drug related. My thoughts and prayers are with MH and his wife, and with the patients and families whose disease is in a more dangerous stage than my own.
Wednesday, October 14, 2009
I'm still nervous
When I was told last night, on my cell phone with a bad connection, that I had nothing to worry about, I was so relieved that I didn't really focus enough to ask some follow-up questions. So I've emailed them to BJ. Here they are...and I'm not so sure that I have nothing to worry about.
I've been reading up on immunofixation. Briefly, as elaborated upon here before, it is a much more sensitive way of testing blood for monoclonal protein than protein electrophoresis, and can find much small amounts as a result. Once my SPEP came back low enough to justify it, they began doing immunofixation tests on me. I have had five to-date.
The first two were in late July in Little Rock, where a distinct monoclonal band was observed under immunofixation. Not surprising, as my M-Spike was around .3 or .4. This was the point at which my original hematologist in Beverly Hills said I had a "meaningless level of the disease" but I wasn't satisfied with that -- recall the difference in outcome from achieving CR versus not achieving it.
The next test was done in Los Angeles in early September. At this time, I was immunofixation negative. No monoclonal protein was detected.
The next test was done in Little Rock in mid September. At this time, the test said something like "monoclonal protein in not detected but cannot be excluded; multiple poly clonal kappa bands are also present." BB was very happy with this, pronouncing it a sign of "very profound complete remission status."
Then came the test from last week, which said that a faint monoclonal band was detected under immunofixation.
I've read up a bit on the specific terminology, and I'll let this report speak for itself. It's from the book "Proteasome Inhibitors in Cancer Therapy" -- sounds like real light reading, doesn't it? :) Regarding a patient undergoing initial trials for the proteasome inhibitor Velcade (bortezomib) the author writes:
This is very disconcerting, obviously.
So my question (in multiple parts) is as follows:
BJ's response, in real time as I wrote this blog entry, is reassuring yet not quite as detailed and direct as would optimally be the case. So I will have to have a follow-up conversation, probably first with Dr. GD as I'll see him on Tuesday and it is his lab (or the one that he outsources to) that had the two tests done. Also, we do need to keep in mind that the report from yesterday wasn't exactly fulsome. It said only: "A faint IGG (lambda) monoclonal immunoglobulin is detected."
Anyhow, her response:
Hmm...well, I do think that if it is never found again, that's probably the best indication of my overall well being. But I remind myself I am on three years (well, two years, eleven and a half months now) of very powerful medicine. What I am on now, with effectively no disease (can't quite say it without that qualifier any longer), is what most doctors prescribe to people with raging myeloma. So I'm sure the overkill approach, which has gotten me this far, will continue to work. I recall Dr. KA's presentation at the last MMRF conference where he (being a Red Sox fan) noted that protein goes to zero quickly but it's very difficult to get the last Yankee out of the system. I've got at least one straggler in there...let's hope it's not Derek Jeter
I've been reading up on immunofixation. Briefly, as elaborated upon here before, it is a much more sensitive way of testing blood for monoclonal protein than protein electrophoresis, and can find much small amounts as a result. Once my SPEP came back low enough to justify it, they began doing immunofixation tests on me. I have had five to-date.
The first two were in late July in Little Rock, where a distinct monoclonal band was observed under immunofixation. Not surprising, as my M-Spike was around .3 or .4. This was the point at which my original hematologist in Beverly Hills said I had a "meaningless level of the disease" but I wasn't satisfied with that -- recall the difference in outcome from achieving CR versus not achieving it.
The next test was done in Los Angeles in early September. At this time, I was immunofixation negative. No monoclonal protein was detected.
The next test was done in Little Rock in mid September. At this time, the test said something like "monoclonal protein in not detected but cannot be excluded; multiple poly clonal kappa bands are also present." BB was very happy with this, pronouncing it a sign of "very profound complete remission status."
Then came the test from last week, which said that a faint monoclonal band was detected under immunofixation.
I've read up a bit on the specific terminology, and I'll let this report speak for itself. It's from the book "Proteasome Inhibitors in Cancer Therapy" -- sounds like real light reading, doesn't it? :) Regarding a patient undergoing initial trials for the proteasome inhibitor Velcade (bortezomib) the author writes:
This patient had initially responded to vincristine-doxorubicin (Adriamycin)-dexamethasone (VAD) but subsequently relapsed and was refractory to VAD and topotecan-dexamethasone. She had a confirmed complete response after three cycles of bortezomib and went on to complete four cycles of therapy. Although evidence of recurrence (faint monoclonal band in immunofixation) occured 6 months later, she requried no antimyeloma therapy for a year.
This is very disconcerting, obviously.
So my question (in multiple parts) is as follows:
Is this new data or is it likely that I had the faint band when tested before? The previous test here at the same lab said it was immunofixation negative. So it does seem like a change, even if there are oligoclonal bands surrounding the monoclonal band. Or is it that I had probably not reached true immunofixation negative status before and the test here was a "false negative"? And if that is the case, am I technically in complete remission? And lastly, should we continue to look for elimination of the monoclonal band entirely as a sign of further progress?
BJ's response, in real time as I wrote this blog entry, is reassuring yet not quite as detailed and direct as would optimally be the case. So I will have to have a follow-up conversation, probably first with Dr. GD as I'll see him on Tuesday and it is his lab (or the one that he outsources to) that had the two tests done. Also, we do need to keep in mind that the report from yesterday wasn't exactly fulsome. It said only: "A faint IGG (lambda) monoclonal immunoglobulin is detected."
Anyhow, her response:
This is realllllly not important in the scheme. A faint band may be a part of the response to treatment. Do not dwell on this as you will go crazy as it is totally unfound one month and faint the next. It has no bearing on your overall well being, does not, ever, signal relapse. Not never no how!!!!!!!
Hmm...well, I do think that if it is never found again, that's probably the best indication of my overall well being. But I remind myself I am on three years (well, two years, eleven and a half months now) of very powerful medicine. What I am on now, with effectively no disease (can't quite say it without that qualifier any longer), is what most doctors prescribe to people with raging myeloma. So I'm sure the overkill approach, which has gotten me this far, will continue to work. I recall Dr. KA's presentation at the last MMRF conference where he (being a Red Sox fan) noted that protein goes to zero quickly but it's very difficult to get the last Yankee out of the system. I've got at least one straggler in there...let's hope it's not Derek Jeter
Tuesday, October 13, 2009
Huge relief
Huge relief.
Huge pain in my legs from the Dex; haven't gotten "Dex voice" yet but that is coming so I'll take some Pantroprazole before I hit the sack.
Huge bill from the best Italian food in LA, but it was worth it. Some amazing wine courtesy of my wine group.
2005 Kongsgaard "The Judge" Chardonnay - (the one I brought, and I thought one of the three best)
2003 Chateauneuf du Pape Blanc, cant recall the winery, but quite nice
2001 Riseling (German) which did not pair well with the food but which would have been quite nice if paired better
1995 Brunello di Montalcino from another producer whose name is forgotten -- a very nice bottle from a great year
1992 Jarvis -- I didn't recover from cancer to drink wine this mediocre -- the clear odd-man out for the evening
1986 Gruaud Larose -- a stupendous Bordeaux which is drinking wonderfully right now
2000 Sine Qua Non Incognito -- nothing less than the greatest Grenache ever made in the United States
There were six of us over three hours, and I had a driver for the evening, so it's not quite as bad as it looks just from reading the long list. Suffice to say, though, it was good to blow off my concerns of earlier in the day. By the end of the second wine, I was okay. But the fifth wine, my primary concern was no longer cancer, but the poor quality of that bottle. :)
This is an abject lesson in the need to remain vigilant, and a reminder that even when one achieves CR, one has to wait the magic 72 months before one can be confident that one is really cured for good. I remind myself, also, that the medications I am on for maintenance while in complete remission are the same medicines that most doctors prescribe to people with highly active disease. I remain on the "kill it, kill it, kill it!!!" program and I'm happy to be here.
So now, off to take an Ambien so I can hopefully sleep.
Nighty night, folks.
Huge pain in my legs from the Dex; haven't gotten "Dex voice" yet but that is coming so I'll take some Pantroprazole before I hit the sack.
Huge bill from the best Italian food in LA, but it was worth it. Some amazing wine courtesy of my wine group.
2005 Kongsgaard "The Judge" Chardonnay - (the one I brought, and I thought one of the three best)
2003 Chateauneuf du Pape Blanc, cant recall the winery, but quite nice
2001 Riseling (German) which did not pair well with the food but which would have been quite nice if paired better
1995 Brunello di Montalcino from another producer whose name is forgotten -- a very nice bottle from a great year
1992 Jarvis -- I didn't recover from cancer to drink wine this mediocre -- the clear odd-man out for the evening
1986 Gruaud Larose -- a stupendous Bordeaux which is drinking wonderfully right now
2000 Sine Qua Non Incognito -- nothing less than the greatest Grenache ever made in the United States
There were six of us over three hours, and I had a driver for the evening, so it's not quite as bad as it looks just from reading the long list. Suffice to say, though, it was good to blow off my concerns of earlier in the day. By the end of the second wine, I was okay. But the fifth wine, my primary concern was no longer cancer, but the poor quality of that bottle. :)
This is an abject lesson in the need to remain vigilant, and a reminder that even when one achieves CR, one has to wait the magic 72 months before one can be confident that one is really cured for good. I remind myself, also, that the medications I am on for maintenance while in complete remission are the same medicines that most doctors prescribe to people with highly active disease. I remain on the "kill it, kill it, kill it!!!" program and I'm happy to be here.
So now, off to take an Ambien so I can hopefully sleep.
Nighty night, folks.
All clear
Brief message from BB, through BJ, after reviewing the labs that I faxed to him.
"This is nothing. Do not be concerned."
HUGE relief.
Evidently, the faint monoclonal band that is there is par for the course.
Still, I won't be happy until it is gone.
More Velcade, Rev and Dex on tap and I'm very, very happy about it.
Thanks to all for your prayers and positivity -- it's been quite an afternoon. I'm off to elevate my liver numbers with some wine.
"This is nothing. Do not be concerned."
HUGE relief.
Evidently, the faint monoclonal band that is there is par for the course.
Still, I won't be happy until it is gone.
More Velcade, Rev and Dex on tap and I'm very, very happy about it.
Thanks to all for your prayers and positivity -- it's been quite an afternoon. I'm off to elevate my liver numbers with some wine.
Ruh roh, Raggy.
Who knew that there would exist such a perfect and pithy phrase, courtesy of a show about a talking dog and featuring a beatnik / yippie -- voiced by Casey Kasem, no less -- who shared an interest in what was an obvious metaphor for pot brownies (really, you're going to tell me a Scooby snack is anything else?), to convey my sense of dread?
Long story short, just returned from weekly Velcade. Platelets are in the 120s which isn't great. PSA appears normal although it is higher than zero, which my friend Dr. BM will probably tell me is a bad sign.
The real issue, though, is the data back from the immunofixation test, which reads as follows. "A faint IGG (lambda) monoclonal immunoglobulin is detected."
My head tells me that this is either test noise or only part of the picture (if there are other bands then we have an oligoclonal situation which is a positive sign). My head tells me that I wouldn't attain CR and then lose it six weeks later while the affects of my two transplants are still within 100 days. My head tells me a lot of things.
My heart, on the other hand, is quite concerned.
I have faxed all of the lab information to the irrepressible BJ, BB's chief of staff, and I'm awaiting the good doctor's thoughts on it.
I will obviously post the news as soon as I have any. Please keep your prayers and positive thoughts coming -- this has to just be a meaningless little hiccup...anything more and it's not a good situation.
All I can say right now is "zoinks, Scoob."
Lost in Translation, and the Importance of a Pillbox
Happy Tuesday, folks. Tuesday is Velcade day in these parts. Which means it's also Dex day. I don't like Dex days but they're a necessary evil! I'm fortunate, again, that I don't have the anger / anxiety side effects of Dex. I've been in physical therapy, though, and let me tell you the muscle-wasting effects of Dex are an issue based on how much I hurt! :) Hopefully I can do enough to keep the atrophy at bay.
Maintenance therapy involves a lot of "supportive care" drugs, not just the "big three" of Velcade, Revlimid and Dex. Mine are:
* Baby aspirin, to ward off deep vein thrombosis from the combination of Rev and Dex
* Pantoprazole, to counteract the esophageal problems that Dex causes
* Acyclovir, to help my compromised immune system fight off the flu
* TamiFlu, for the same reason
* MetaNx, to keep peripheral neuropathy at bay
* Alpha Lipoic Acid, for the same reason
* Ambien, in case I can't sleep on Dex day
* Zometa (by infusion) to help fill in all the holes in my bones
* Testosterone (by injection) for general mojo
There's a lot of room for "pilot error" in all this stuff. and there's also room for transcription error. I remember one time during my initial consult, where I was debating between doing Total Therapy in Arkansas versus Los Angeles, BB had dictated "patient will return to Los Angeles and determine where this whole deal is going to happen." And the transcription came back "patient will return...and determine whether this ordeal is going to happen." :)
So among other confusions, which I have now cleared up:
* I was taking only one aspirin a day; now I will take two
* I was taking Acyclovir only once per day; now I will take two
* Dr. GD's office thought I would get Zometa each month; it turns out the one infusion is all BB wants
* BB's notes were transcribed as taking 15mg x 20 days on Revlimid, followed by 4 days of 5mg. This is just flat-out wrong. The proper dosage is 15mg x 21 days, with 7 days off.
This is a lot of pills! So that daily pillbox that I put to good use during therapy (I recall one day counting the number of pills I had to take and noting that there were more than FORTY of them) will be brought back out!
Maintenance therapy involves a lot of "supportive care" drugs, not just the "big three" of Velcade, Revlimid and Dex. Mine are:
* Baby aspirin, to ward off deep vein thrombosis from the combination of Rev and Dex
* Pantoprazole, to counteract the esophageal problems that Dex causes
* Acyclovir, to help my compromised immune system fight off the flu
* TamiFlu, for the same reason
* MetaNx, to keep peripheral neuropathy at bay
* Alpha Lipoic Acid, for the same reason
* Ambien, in case I can't sleep on Dex day
* Zometa (by infusion) to help fill in all the holes in my bones
* Testosterone (by injection) for general mojo
There's a lot of room for "pilot error" in all this stuff. and there's also room for transcription error. I remember one time during my initial consult, where I was debating between doing Total Therapy in Arkansas versus Los Angeles, BB had dictated "patient will return to Los Angeles and determine where this whole deal is going to happen." And the transcription came back "patient will return...and determine whether this ordeal is going to happen." :)
So among other confusions, which I have now cleared up:
* I was taking only one aspirin a day; now I will take two
* I was taking Acyclovir only once per day; now I will take two
* Dr. GD's office thought I would get Zometa each month; it turns out the one infusion is all BB wants
* BB's notes were transcribed as taking 15mg x 20 days on Revlimid, followed by 4 days of 5mg. This is just flat-out wrong. The proper dosage is 15mg x 21 days, with 7 days off.
This is a lot of pills! So that daily pillbox that I put to good use during therapy (I recall one day counting the number of pills I had to take and noting that there were more than FORTY of them) will be brought back out!
Thursday, October 8, 2009
Apologies to Henry Mancini, and other news
Well...so this was me on Tuesday.
Slightly different dialogue, though. In the film, Chevy Chase ends by asking the doctor if he's done time, and then adds "are you gonna use the whole FIST there doc?"
My dialogue was more like this.
Me (casually) "I'd like to add a PSA test to my bloodwork since the chemo left me with a slightly enlarged prostate."
Doctor (looking like he's just found an unopened present under the tree) "Let's check that out."
Me: "I don't think that's necessary, we already know it's enlarged."
Doctor (snapping the glove on his hand) "Well *I* don't know that it's enlarged. Turn around, elbows on the table."
Me: "But I've seen the PET scan."
Doctor "You don't need a PET scan to tell you that you have an enlarged prostate, and I don't know how big it is."
Me: "Sure you do, it's 4.5cm. My best friend is a doctor and he tells me the digital exam is 98% uselesssssWOWWWWW!"
Ahem. Enough of that.
Doc says the prostate has no hardening or extra nodules and doesn't seem all that enlarged. That's good news. However it doesn't really put me any more at ease than getting the PSA and free PSA test back will. We shall see. I suppose if the PSA is high (I have long-since given up the assumption that my numbers from any given test will be in the "normal" range) we can use the digital exam to help triangulate whether or not we think there is a real problem.
They accessed my interior port (note: while this could be another euphemism for the prostate exam, I am now referring to the portacath closer to my neck) and I was prepared for the worst since it was still sensitive to the touch. However, I was relieved (shocked, actually) that it didn't hurt at all. I used a lidocaine based numbing solution called Emla cream at their instruction (and with their prescription) and on top of this they sprayed a freezing solution to numb the area, and it was pretty easy after that.
My detailed bloodwork won't be back until today or tomorrow (and there won't be an M-spike run this time...I'm sure it is zero). I probably won't bother to obtain the results (essentially blood chemistry, liver numbers, cholesterol and PSA) until Tuesday when I'm back in for my next Velcade push. Preliminary results from the bloodwork, however, are mostly encouraging.
* White blood count is normal at 5.3 and I have a large percentage of young white blood cells (granulacytes) which means the system is working and new cells are being made and so the counts should continue to stabilize.
*Hemoglobin is at 14.6, which is the highest since diagnosis! Now if my darling two year old son would stop waking up at 3AM every night and completely robbing us of sleep, I might actually have some energy.
* RDW, the measure of the variability in width of the red blood cells which is a marker for anemia and thus myeloma, is down to 13.1 which is squarely in the normal range and again the lowest it has been since diagnosis (apart from one or two strange days in the middle of high dose therapy when things were bouncing around)
* Platelets have fallen to 135, which is either barely normal or a bit low depending on which reference range is used. This is to be expected by virtue of Revlimid, which is known to cause all these types of counts to be suppressed. Frankly I'm lucky to be getting away with mild thrombocytopenia (low platelets).
On the plus side, I'd been told wayyyy back when by Dr. KA at Dana Farber that Revlimid also lowers blood pressure, and mine was 119 over 84 at the time of testing (compared to 140 over 90 at City of Hope a week earlier before I started Revlimid). So this is one side effect that I am happy for.
As to other side effects, Revlimid takes the starch outta the old collar, to use a vague euphemism. I may be getting testosterone injections to "give me back my mojo" in the words of Austin Powers. However evidently that can cause prostate problems itself (testosterone injections, not mojo) and so we want to see the PSA tests before doing that. Meanwhile, the only other impact I notice from Revlimid at this point is sleepiness, so I take it at night. Usually this side effect is temporary, lasting from around 11:30PM to the time Carson wakes up screaming.
I've received two IV administrations of Velcade -- 154 to go, or thereabouts! So far, so good. I have tolerated Velcade well in the past, so hopefully that will continue to be a non-issue.
I received an IV infusion of Zometa, a bone strengthening agent, for the first time this past Tuesday. The idea here is that bone destruction and creation is constantly happening in our bodies, and the pace in a normal healthy person keeps that person in stasis. With the myeloma, the speed of destruction outpaced the speed of repair, hence the lesions. Now those lesions have stopped worsening, and I'm back in stasis -- so I need a boost of the bone building activity in order to make up the difference.
This all sounds good and fine. Zometa, according to my nurse, has a half-life of TEN YEARS, though, which is a little unnerving. The biggest potential issue is bone necrosis in the jaw, and so I'm to have no dental work done for the next few months -- at least not without checking. I also need to find out how many times I need this stuff -- I had thought perhaps only once, but there appears to be some confusion as one of the orders appears to call for it 3X, and the nurse told me she usually does it for longer.
I need to speak with the clinic people today about both that, and the maintenance schedule since the orders on Revlimid were convoluted -- I think the oral dictation got a little screwed up. It seems to me I should be on 15mg daily for days 1-21 of a 28 day cycle, but the orders seemed to suggest 20 days of this followed by 4 days of 5mg (which isn't even an available capsule size unless I'm mistaken).
Dex remains the biggest side effect issue. I don't get the steroid rage thing, which is good (for more people than just me). But I have esophageal issues (heartburn and a raspy voice) for about 36 hours, and I feel pain in my legs from muscle atrophy, and my vision gets blurry. I have started physical therapy to rebuild muscle, so hopefully that will help somewhat. But I wrestle with the idea of asking for dose reduction. I remind myself that I have an undesirable "subtype" of Myeloma within the low-risk group, and dose reducing a drug that is effective in cancer therapy probably isn't a great idea if I can avoid it. As much as I hate the medicine, I may just have to accept it. We shall see.
So that about brings us up to date. I want to thank all of you for your support re: the last little post drama and we'll put that whole issue to rest.
Speaking of which, I've now killed the time from 3:30 to 6:15AM and can try to get about 20 minutes of sleep in before both kids wake up again, so that's where I'm headed. And then I have physical therapy in a couple of hours...that's gonna be rough on about six hours of sleep in the past two days. But I need to go...I've been deadlocked at 13 stone 3 for a couple of weeks now.
Slightly different dialogue, though. In the film, Chevy Chase ends by asking the doctor if he's done time, and then adds "are you gonna use the whole FIST there doc?"
My dialogue was more like this.
Me (casually) "I'd like to add a PSA test to my bloodwork since the chemo left me with a slightly enlarged prostate."
Doctor (looking like he's just found an unopened present under the tree) "Let's check that out."
Me: "I don't think that's necessary, we already know it's enlarged."
Doctor (snapping the glove on his hand) "Well *I* don't know that it's enlarged. Turn around, elbows on the table."
Me: "But I've seen the PET scan."
Doctor "You don't need a PET scan to tell you that you have an enlarged prostate, and I don't know how big it is."
Me: "Sure you do, it's 4.5cm. My best friend is a doctor and he tells me the digital exam is 98% uselesssssWOWWWWW!"
Ahem. Enough of that.
Doc says the prostate has no hardening or extra nodules and doesn't seem all that enlarged. That's good news. However it doesn't really put me any more at ease than getting the PSA and free PSA test back will. We shall see. I suppose if the PSA is high (I have long-since given up the assumption that my numbers from any given test will be in the "normal" range) we can use the digital exam to help triangulate whether or not we think there is a real problem.
They accessed my interior port (note: while this could be another euphemism for the prostate exam, I am now referring to the portacath closer to my neck) and I was prepared for the worst since it was still sensitive to the touch. However, I was relieved (shocked, actually) that it didn't hurt at all. I used a lidocaine based numbing solution called Emla cream at their instruction (and with their prescription) and on top of this they sprayed a freezing solution to numb the area, and it was pretty easy after that.
My detailed bloodwork won't be back until today or tomorrow (and there won't be an M-spike run this time...I'm sure it is zero). I probably won't bother to obtain the results (essentially blood chemistry, liver numbers, cholesterol and PSA) until Tuesday when I'm back in for my next Velcade push. Preliminary results from the bloodwork, however, are mostly encouraging.
* White blood count is normal at 5.3 and I have a large percentage of young white blood cells (granulacytes) which means the system is working and new cells are being made and so the counts should continue to stabilize.
*Hemoglobin is at 14.6, which is the highest since diagnosis! Now if my darling two year old son would stop waking up at 3AM every night and completely robbing us of sleep, I might actually have some energy.
* RDW, the measure of the variability in width of the red blood cells which is a marker for anemia and thus myeloma, is down to 13.1 which is squarely in the normal range and again the lowest it has been since diagnosis (apart from one or two strange days in the middle of high dose therapy when things were bouncing around)
* Platelets have fallen to 135, which is either barely normal or a bit low depending on which reference range is used. This is to be expected by virtue of Revlimid, which is known to cause all these types of counts to be suppressed. Frankly I'm lucky to be getting away with mild thrombocytopenia (low platelets).
On the plus side, I'd been told wayyyy back when by Dr. KA at Dana Farber that Revlimid also lowers blood pressure, and mine was 119 over 84 at the time of testing (compared to 140 over 90 at City of Hope a week earlier before I started Revlimid). So this is one side effect that I am happy for.
As to other side effects, Revlimid takes the starch outta the old collar, to use a vague euphemism. I may be getting testosterone injections to "give me back my mojo" in the words of Austin Powers. However evidently that can cause prostate problems itself (testosterone injections, not mojo) and so we want to see the PSA tests before doing that. Meanwhile, the only other impact I notice from Revlimid at this point is sleepiness, so I take it at night. Usually this side effect is temporary, lasting from around 11:30PM to the time Carson wakes up screaming.
I've received two IV administrations of Velcade -- 154 to go, or thereabouts! So far, so good. I have tolerated Velcade well in the past, so hopefully that will continue to be a non-issue.
I received an IV infusion of Zometa, a bone strengthening agent, for the first time this past Tuesday. The idea here is that bone destruction and creation is constantly happening in our bodies, and the pace in a normal healthy person keeps that person in stasis. With the myeloma, the speed of destruction outpaced the speed of repair, hence the lesions. Now those lesions have stopped worsening, and I'm back in stasis -- so I need a boost of the bone building activity in order to make up the difference.
This all sounds good and fine. Zometa, according to my nurse, has a half-life of TEN YEARS, though, which is a little unnerving. The biggest potential issue is bone necrosis in the jaw, and so I'm to have no dental work done for the next few months -- at least not without checking. I also need to find out how many times I need this stuff -- I had thought perhaps only once, but there appears to be some confusion as one of the orders appears to call for it 3X, and the nurse told me she usually does it for longer.
I need to speak with the clinic people today about both that, and the maintenance schedule since the orders on Revlimid were convoluted -- I think the oral dictation got a little screwed up. It seems to me I should be on 15mg daily for days 1-21 of a 28 day cycle, but the orders seemed to suggest 20 days of this followed by 4 days of 5mg (which isn't even an available capsule size unless I'm mistaken).
Dex remains the biggest side effect issue. I don't get the steroid rage thing, which is good (for more people than just me). But I have esophageal issues (heartburn and a raspy voice) for about 36 hours, and I feel pain in my legs from muscle atrophy, and my vision gets blurry. I have started physical therapy to rebuild muscle, so hopefully that will help somewhat. But I wrestle with the idea of asking for dose reduction. I remind myself that I have an undesirable "subtype" of Myeloma within the low-risk group, and dose reducing a drug that is effective in cancer therapy probably isn't a great idea if I can avoid it. As much as I hate the medicine, I may just have to accept it. We shall see.
So that about brings us up to date. I want to thank all of you for your support re: the last little post drama and we'll put that whole issue to rest.
Speaking of which, I've now killed the time from 3:30 to 6:15AM and can try to get about 20 minutes of sleep in before both kids wake up again, so that's where I'm headed. And then I have physical therapy in a couple of hours...that's gonna be rough on about six hours of sleep in the past two days. But I need to go...I've been deadlocked at 13 stone 3 for a couple of weeks now.
Tuesday, October 6, 2009
Very quick note
Hello folks.
I was going to do an update, but frankly a comment in my last entry has left me feeling pretty depressed and not really wanting to contribute anything right now. I know it shouldn't bother me, but it does -- among other things it blatantly responds to my hope of being cured by saying that I'm not, which is in my opinion just shameful. Anyhow, I'm close to having what my one-time roommate in Arkansas referred to as the "boo hoos" so I'm going to try to just keep off this blog for a day or two.
But I didn't want you to think I'd fallen off the face of the earth, hence this quick note. I'll try to update more substantively later this week.
Be well.
P.S. As an aside, a large part of me wants to take the high road and not even mention this, or even delete the offending comment. However this is all part of the journey, right? It's in keeping with the honesty of the blog -- which I think is something you appreciate -- that I report both the hurtful comment and how it made me feel. So in the end, that wins out. Thanks for understanding.
P.P.S. Please don't interpret this entry as begging for sympathy! Not that it isn't appreciated, of course, but this is a tiny thing compared to the many people that face a more dire diagnosis than I did, or who haven't responded as well to treatment. They are the ones most deserving of compassion from all of us.
I was going to do an update, but frankly a comment in my last entry has left me feeling pretty depressed and not really wanting to contribute anything right now. I know it shouldn't bother me, but it does -- among other things it blatantly responds to my hope of being cured by saying that I'm not, which is in my opinion just shameful. Anyhow, I'm close to having what my one-time roommate in Arkansas referred to as the "boo hoos" so I'm going to try to just keep off this blog for a day or two.
But I didn't want you to think I'd fallen off the face of the earth, hence this quick note. I'll try to update more substantively later this week.
Be well.
P.S. As an aside, a large part of me wants to take the high road and not even mention this, or even delete the offending comment. However this is all part of the journey, right? It's in keeping with the honesty of the blog -- which I think is something you appreciate -- that I report both the hurtful comment and how it made me feel. So in the end, that wins out. Thanks for understanding.
P.P.S. Please don't interpret this entry as begging for sympathy! Not that it isn't appreciated, of course, but this is a tiny thing compared to the many people that face a more dire diagnosis than I did, or who haven't responded as well to treatment. They are the ones most deserving of compassion from all of us.
Wednesday, September 30, 2009
Taking the blog to the next level...opinions wanted!
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.
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.
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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