Thursday, June 13, 2013
It's a mystery, so far
Some of my lab results are back, and there's some good news in there. My IgM level (a blood protein that's a marker for the disease) is the lowest it's ever been, at 1160, so first guess is that it's not the disease, come roaring back. There are more results that aren't available yet, in particular an analysis of the bone marrow sample that Dr. Treon took in Boston, so that's still a tentative conclusion. My blood iron levels are in range, so my body is apparently absorbing iron appropriately. So what could it be? Well, if the bone marrow is crowded with Waldenstrom cells, that could mean that the disease is active and crowding out the production of red blood cells, but then it's a question as to why the Waldenstrom cells aren't producing more IgM, and why the Rituxan treatments stopped working all of a sudden. Another possibility is that the anemia is unrelated to the disease. It's a fair bet that various unpleasant -oscopies may be in my future.
Wednesday, June 12, 2013
Someone else's story
This was posted to the IWMF-TALK list today. It's the story of a broadcaster in the UK who recently died - at the young age of 48 - from WM. Here's something he wrote earlier in the progression of his disease.
http://www.dailymail.co.uk/health/article-552311/Radio-4-newsreader-Rory-Morrison-announces-Ive-got-cancer-I-refuse-let-beat-me.html
http://www.dailymail.co.uk/health/article-552311/Radio-4-newsreader-Rory-Morrison-announces-Ive-got-cancer-I-refuse-let-beat-me.html
Relapse?
I just finished 2 years of "Maintenance Rituxan" back in March, and up til then it had gone very well. My hemoglobin levels had returned to normal - I wasn't anemic anymore. My IgM levels had dropped down to around 1300 (the high was somewhere around 3000 when I was first diagnosed), which is well above normal, but is much improved and not very dangerous. But then early this month, I went for my 3 month checkup and my hemoglobin level has dropped back down into the "anemic" range. Now this could have several causes: the disease may have come roaring back, although it's unusual for it to roar like that. It's generally an indolent, or slow-moving, disease. I could be losing blood somewhere, although there's no obvious evidence of that. Or there could be something going on, perhaps related to the disease, that's killing red blood cells. Or it's possible that something is preventing my system from absorbing and processing iron, the "key ingredient" to hemoglobin. So I went back up to Boston on Monday to see Dr. Treon. He did a bone marrow biopsy, to gauge the level of the disease, and also took several vials of blood to test for other eventualities. I should get some answers - or at least some next steps - late this week.
Saturday, April 16, 2011
The Road Ahead
The last treatment in the Cytoxan-Dexamethasone-Rituxan regimen was in early March, and I went up to Dana-Farber Cancer Institute in Boston to see Dr. Treon Tuesday a week ago. He didn't have much to say about the treatments so far, but encouraged me strongly to continue on Rituxan maintenance. It would be one infusion every three months. There's no evidence of a buildup of resistance, so that's not a consideration. The one downside is that it depresses "good" antibodies in addition to the nasty monoclonal IgM that's a marker of the disease. So some people have increased incidence of infection, particularly in the chest and sinuses. However, that's generally manageable with antibiotics. On the plus side, it generally doubles the time to return of symptoms. So my plan is to go ahead with it.
They also did complete blood work, and that's all good news. My hemoglobin is over 13 (normal is 12-18), and the IgM is down to 1510. That's still way over normal (which is 40-230), but it's a > 50% reduction from the high point. The standard is to treat symptoms (like anemia, or solid tumors, or cryoglobulinemia), and not just the IgM number. And with the maintenance Rituxan, the number may come down even further.
Other good news: Dr. Treon did a DNA sequence on my marrow and the marrow of 29 other patients, and he found a common gene defect. He can see a causal relationship between the defect and the disease. This is exciting news: once a defect is identified, it's possible to engineer a protein that would switch off the gene. However, for a disease with so few patients, it might not be economical for a drug company to invent the protein and then go through clinical trials, approval, and marketing. That's typically an investment of 10s or even 100s of millions of dollars. On the other hand, the defect may cause other diseases as well, which could boost the target population and improve the economics.
So things are generally positive, given that I have an incurable disease. From my experience, and that of many others, it is treatable and manageable, even if it stays with you.
[Sidebar: what the heck are solid tumors and cryoglobulinemia? The malignant B-cells that characterize the disease can clump together into larger masses that can be felt by manual examination. They tend to occur in the lymphatic system, so swollen glands can be a concern with this disease. It could be an indication of these tumors. Cryoglobulinemia is the tendency of the IgM to thicken and become gel-like at low temperatures. This can cause all kinds of bad things to happen, like difficulty breathing, fatigue, muscle pain, and pain in the extremities.]
They also did complete blood work, and that's all good news. My hemoglobin is over 13 (normal is 12-18), and the IgM is down to 1510. That's still way over normal (which is 40-230), but it's a > 50% reduction from the high point. The standard is to treat symptoms (like anemia, or solid tumors, or cryoglobulinemia), and not just the IgM number. And with the maintenance Rituxan, the number may come down even further.
Other good news: Dr. Treon did a DNA sequence on my marrow and the marrow of 29 other patients, and he found a common gene defect. He can see a causal relationship between the defect and the disease. This is exciting news: once a defect is identified, it's possible to engineer a protein that would switch off the gene. However, for a disease with so few patients, it might not be economical for a drug company to invent the protein and then go through clinical trials, approval, and marketing. That's typically an investment of 10s or even 100s of millions of dollars. On the other hand, the defect may cause other diseases as well, which could boost the target population and improve the economics.
So things are generally positive, given that I have an incurable disease. From my experience, and that of many others, it is treatable and manageable, even if it stays with you.
[Sidebar: what the heck are solid tumors and cryoglobulinemia? The malignant B-cells that characterize the disease can clump together into larger masses that can be felt by manual examination. They tend to occur in the lymphatic system, so swollen glands can be a concern with this disease. It could be an indication of these tumors. Cryoglobulinemia is the tendency of the IgM to thicken and become gel-like at low temperatures. This can cause all kinds of bad things to happen, like difficulty breathing, fatigue, muscle pain, and pain in the extremities.]
Tuesday, February 15, 2011
Normalcy!
Haven't posted since October - I guess because the Cytoxan/Decadron/Rituxan (CDR) treatment is going fairly smoothly, and without any particular incidents. The IgM measurements - the "evil proteins" that are floating around in and thickening my blood - are steadily going down, but not at a particularly astonishing rate. At diagnosis, the number was 3190 milligrams per deciliter; the normal range for an adult is between 40 and 230. At the beginning of the CDR regimen, it had gone up to 3363. They draw blood to test the number at each treatment (every three weeks), and the most recent report was 2146. So it's going in the right direction. I saw that report yesterday, at treatment number 7 of 8, and it was from blood drawn just before treatment 6. So it really shows the effect of treatments 1-5. That's a drop of 32%, and a drop between 25% and 50% is called a "minor response." Hence, I'm responding! If the drop-rate from treatment to treatment continues (about 9% recently), I'll get to the "partial response" range - a > 50% drop overall by the end this regimen.
But that's not the normalcy I'm so happy about. For the first time since diagnosis, I'm officially not anemic! Normal range for hemoglobin is 12 - 18 grams per deciliter, and I hit 12.7 on Monday. Most of the summer and up to the start of treatment I was in the range of 7.5 to 8.5, so this is great news.
I have to keep in mind that this is not a curable disease. After treatment stops, the symptoms will start to recur at some point. There's a decision coming up: whether to continue so-called maintenance treatments of Rituxan, with an infusion every three months. There is some evidence that this increases the time, by as much of a factor of two, until more regular treatments are needed. But there is no evidence that it increases survival time, which is the gold standard for cancer treatments. And some people develop a resistance to Rituxan over time, so when the symptoms do return, Rituxan might not do its job anymore. There are new treatments on the horizon, though. So some of the factors to weigh are: likelihood of developing resistance; the quality of life aspect of going a longer time without treatment; the availability of alternative treatments; and the cost to the healthcare system. On this last point: if treatment isn't a hardship - which it hasn't really been - then perhaps the quality of life aspect is not all that important, and why add stress to the system, since survival time is not increased? Decisions, decisions.
Regarding side-effects: I've had few. I tolerate the Rituxan well. The Cytoxan can cause nausea, but I'd say I've really only experienced queasiness. As reported in the previous post, the anti-nausea pills they gave me were knocking me out, so I've been just dealing with the queasiness. (My son has provided me with an alternative, herbal treatment for nausea, baked into cookies. The herb comes from Northern California. Haven't needed to try them yet.) The most serious side-effect is that I'm pretty wiped out on either Wednesday or Thursday following the Monday treatments, and miss a half-day of work or so. Fortunately, the workload permits this, and everyone at work is very understanding.
But that's not the normalcy I'm so happy about. For the first time since diagnosis, I'm officially not anemic! Normal range for hemoglobin is 12 - 18 grams per deciliter, and I hit 12.7 on Monday. Most of the summer and up to the start of treatment I was in the range of 7.5 to 8.5, so this is great news.
I have to keep in mind that this is not a curable disease. After treatment stops, the symptoms will start to recur at some point. There's a decision coming up: whether to continue so-called maintenance treatments of Rituxan, with an infusion every three months. There is some evidence that this increases the time, by as much of a factor of two, until more regular treatments are needed. But there is no evidence that it increases survival time, which is the gold standard for cancer treatments. And some people develop a resistance to Rituxan over time, so when the symptoms do return, Rituxan might not do its job anymore. There are new treatments on the horizon, though. So some of the factors to weigh are: likelihood of developing resistance; the quality of life aspect of going a longer time without treatment; the availability of alternative treatments; and the cost to the healthcare system. On this last point: if treatment isn't a hardship - which it hasn't really been - then perhaps the quality of life aspect is not all that important, and why add stress to the system, since survival time is not increased? Decisions, decisions.
Regarding side-effects: I've had few. I tolerate the Rituxan well. The Cytoxan can cause nausea, but I'd say I've really only experienced queasiness. As reported in the previous post, the anti-nausea pills they gave me were knocking me out, so I've been just dealing with the queasiness. (My son has provided me with an alternative, herbal treatment for nausea, baked into cookies. The herb comes from Northern California. Haven't needed to try them yet.) The most serious side-effect is that I'm pretty wiped out on either Wednesday or Thursday following the Monday treatments, and miss a half-day of work or so. Fortunately, the workload permits this, and everyone at work is very understanding.
Sunday, October 17, 2010
Change of Course
It's been way too long since my last post. I think it's because I was feeling low about getting "kicked out" of the RAD001 trial :(. It was nice to think that I could just take a pill every day, and I'd start to get better. Unfortunately, it wasn't working that way for me. At my last visit to DFCI, Dr. Treon decided we should do a bone marrow biopsy to see if the disease was going anywhere. There was basically no change to the extent of invasion in the marrow. So even though the blood IgM levels had been going down, the disease load wasn't improving. Somehow, the RAD001 got the tumor cells to secrete less IgM, but was not reducing the number of evil cells.
So that led to another difficult decision about treatment. Dr. Treon recommended some form of treatment with Rituxan. He laid out the pros and cons of 4 different combination therapies: Velcade/Dexamethasone/Rituxan; Bendamustine/Rituxan; Cytoxan/Dexamethasone/Rituxan; or Pomalidamide/Dexamethasone/Rituxan (in trial at DFCI). To make a long and tortured story short, I settled on the Cytoxan option. Velcade has some scary side effects (particularly peripheral neuropathy, a severe tingling and/or pain in feet and hands); there's very little data on the long-term side effects of Bendamustine therapy; and Pomalidamide has caused low blood counts in some patients. Cytoxan has its own issues: it can cause genetic mutations, but it has been in use for decades and oncologists have "tuned" the dosage pretty well by now. All of these can be administered locally, although the Pomalidamide would be started in Boston and would require a monthly trip up there.
My local hematologist also suggested Rituxan alone, but Dr. Treon pointed out that combination therapy has had much better results.
In an earlier post, before going on the trial, I had decided to try Velcade. I've read a lot more about it since then, hence my decision to go in a different direction.
I also looked into a number of clinical trials - some sound very intriguing - but ultimately decided that since I've tried one experiment, now I'll try the "traditional" treatment. WM is an indolent disease, and my symptoms haven't been too bad, so if the Rituxan doesn't work, I can try something else after that.
So on October 4, my wife Jodi brought me up to the cancer center at Overlook Hospital to start my infusions. I'll get infusions every three weeks for six or eight rounds, depending on the response. I felt fairly optimistic, because the regimen has been in use for many years and is pretty well understood. As Dr. Treon told me, it's not rocket science. The infusion lasted about 5 hours, and Jodi hung around for moral support. There wasn't much to do, really, and she was able to get some work done.
Rituxan is a derived from a mouse antibody. When your body encounters it, it's not unusual to get a severe allergic reaction as your own antibodies gear up to ward off this intruder. So they start you off with a big dose of IV benadryl to try to lessen the reaction. That made me pretty drowsy, and I napped for the first hour or two. The Rituxan infusion is started at a low rate, and increased every hour or so, again to try to control the allergic reaction. If there's a reaction, they slow it down or stop it until the sneezing or whatever stops. I was lucky, I guess - I had no ill effects at all. At the end of the day, I expected to be able to go to work on Tuesday.
That's when the trouble started. I woke up Tuesday feeling a little nauseous - a normal reaction to the Cytoxan - so I started taking anti-nausea pills on a four-hour schedule. Then I was exhausted all day. I was able to work a few hours from home. On Wednesday, I managed to get in to work - I really wanted to resume normal life - but I arrived late and had to leave early because I was so fatigued. I actually was a little worried on the drive home that my reaction time might be slowed down enough to be dangerous. Thursday was a little better - and that's when I noticed that the pill bottle said "may cause drowsiness." So I switched over to a different pill that you could take on a 12 hour schedule, and felt much better. I'm not sure whether it was the pill or the Cytoxan reaction that caused the problem. I guess I can find out after the next infusion.
The weekend was OK - I was tired, but not like during the week, more like the anemia-related tiredness that I'm pretty used to.
So that led to another difficult decision about treatment. Dr. Treon recommended some form of treatment with Rituxan. He laid out the pros and cons of 4 different combination therapies: Velcade/Dexamethasone/Rituxan; Bendamustine/Rituxan; Cytoxan/Dexamethasone/Rituxan; or Pomalidamide/Dexamethasone/Rituxan (in trial at DFCI). To make a long and tortured story short, I settled on the Cytoxan option. Velcade has some scary side effects (particularly peripheral neuropathy, a severe tingling and/or pain in feet and hands); there's very little data on the long-term side effects of Bendamustine therapy; and Pomalidamide has caused low blood counts in some patients. Cytoxan has its own issues: it can cause genetic mutations, but it has been in use for decades and oncologists have "tuned" the dosage pretty well by now. All of these can be administered locally, although the Pomalidamide would be started in Boston and would require a monthly trip up there.
My local hematologist also suggested Rituxan alone, but Dr. Treon pointed out that combination therapy has had much better results.
In an earlier post, before going on the trial, I had decided to try Velcade. I've read a lot more about it since then, hence my decision to go in a different direction.
I also looked into a number of clinical trials - some sound very intriguing - but ultimately decided that since I've tried one experiment, now I'll try the "traditional" treatment. WM is an indolent disease, and my symptoms haven't been too bad, so if the Rituxan doesn't work, I can try something else after that.
So on October 4, my wife Jodi brought me up to the cancer center at Overlook Hospital to start my infusions. I'll get infusions every three weeks for six or eight rounds, depending on the response. I felt fairly optimistic, because the regimen has been in use for many years and is pretty well understood. As Dr. Treon told me, it's not rocket science. The infusion lasted about 5 hours, and Jodi hung around for moral support. There wasn't much to do, really, and she was able to get some work done.
Rituxan is a derived from a mouse antibody. When your body encounters it, it's not unusual to get a severe allergic reaction as your own antibodies gear up to ward off this intruder. So they start you off with a big dose of IV benadryl to try to lessen the reaction. That made me pretty drowsy, and I napped for the first hour or two. The Rituxan infusion is started at a low rate, and increased every hour or so, again to try to control the allergic reaction. If there's a reaction, they slow it down or stop it until the sneezing or whatever stops. I was lucky, I guess - I had no ill effects at all. At the end of the day, I expected to be able to go to work on Tuesday.
That's when the trouble started. I woke up Tuesday feeling a little nauseous - a normal reaction to the Cytoxan - so I started taking anti-nausea pills on a four-hour schedule. Then I was exhausted all day. I was able to work a few hours from home. On Wednesday, I managed to get in to work - I really wanted to resume normal life - but I arrived late and had to leave early because I was so fatigued. I actually was a little worried on the drive home that my reaction time might be slowed down enough to be dangerous. Thursday was a little better - and that's when I noticed that the pill bottle said "may cause drowsiness." So I switched over to a different pill that you could take on a 12 hour schedule, and felt much better. I'm not sure whether it was the pill or the Cytoxan reaction that caused the problem. I guess I can find out after the next infusion.
The weekend was OK - I was tired, but not like during the week, more like the anemia-related tiredness that I'm pretty used to.
Tuesday, August 24, 2010
Two steps forward, one step back?
A couple of weeks ago - Friday the 13th, to be exact - I had a blood test that showed the count of a particular type of white blood cell to be 0.7. The normal range is 2.0 to 7.8. When I started on the trial, the count was 2.29, I think; it's hard to tell, because each test site (DFCI, local hematologist, and a clinic on Long Island) reports the number under a different name. The local tests report it as "GRAN". The first test at DFCI called it "ABS NEUTROPHILS" (I think), but that doesn't show up on subsequent DFCI tests. The Long Island clinic reported it as NEUT %, which was a percentage rather than an amount. Anyway, my local hematologist felt that the 0.7 number was too low, and recommended holding the RAD001 for a few days. The doctors at DFCI concurred, and asked for a re-test on the following Monday, which was when I went to the clinic on LI. That test showed some improvement in the white blood cells.
I'm a little confused as to why I'm on hold, because the number has been bouncing around between 0.7 and 1.4 for several weeks. The DFCI team expressed concern about the hemoglobin level as well, which was 7.7. (Normal is 14-18, although I started the trial at 8.5 and have been below 8 since early July.)
A blood test yesterday showed results almost identical to the test on Friday the 13th, so DFCI is having me continue to hold the drug. Adding to my confusion is that while the LI test showed improvement in the white blood cells, yesterday's test showed me back down again. The local tests also report GRAN as a percentage, and if that's the same measure as the NEUT % on the LI test, the measure has gone from 21.0% (8/13), to 44% (LI), and back to 19.3% (yesterday). How can that make sense, unless the test machines are wildly variable?
I'll be up in Boston next Tuesday, when they'll test me once again and see if I can get back on the drug. Meanwhile, I'm worried that the progress I've made (as measured by the IgM levels) will be lost. I'm also worried that I'll have to go off the trial, which will put me back in the position of having to decide on what treatment to follow next.
Whatever happens with that, I'm going to try to get the DFCI doctors to explain how to compare the white blood count results from the different labs.
I'm a little confused as to why I'm on hold, because the number has been bouncing around between 0.7 and 1.4 for several weeks. The DFCI team expressed concern about the hemoglobin level as well, which was 7.7. (Normal is 14-18, although I started the trial at 8.5 and have been below 8 since early July.)
A blood test yesterday showed results almost identical to the test on Friday the 13th, so DFCI is having me continue to hold the drug. Adding to my confusion is that while the LI test showed improvement in the white blood cells, yesterday's test showed me back down again. The local tests also report GRAN as a percentage, and if that's the same measure as the NEUT % on the LI test, the measure has gone from 21.0% (8/13), to 44% (LI), and back to 19.3% (yesterday). How can that make sense, unless the test machines are wildly variable?
I'll be up in Boston next Tuesday, when they'll test me once again and see if I can get back on the drug. Meanwhile, I'm worried that the progress I've made (as measured by the IgM levels) will be lost. I'm also worried that I'll have to go off the trial, which will put me back in the position of having to decide on what treatment to follow next.
Whatever happens with that, I'm going to try to get the DFCI doctors to explain how to compare the white blood count results from the different labs.
Saturday, July 31, 2010
Dear Diary
Dear Diary - I've been ignoring you for the past month - shame on me! I guess I got saturated with WM information, and needed a break. I switched from reading everything I could about WM to reading mystery stories (Stieg Larsson highly recommended for escapism).
Anyway, I've been on the RAD001 trial for 2 months now, and want to catalog my experience so far. I started out taking 10 mg/day. WM is characterized by a proliferation of a particular white blood cell (a kind of "B" cell) in the bone marrow; these B cells secrete an abundance of an antibody called IgM. IgM is a normal antibody produced by the body, but when you get too much of it, your blood can get thick and viscous, which can cause all kinds of problems. Think of the thick, viscous tar balls washing up in Louisiana. Also, the WM-related IgM is not the same as the normal IgM. Anyway, the IgM level in my blood is improving. It started at 3190. After one month, it was 2990, and it is now 2640. This is a 17% overall drop, which falls into the official definition of "stable disease". In other words, if this were the end of the trial, the doctors would say it didn't work. Normal IgM levels are somewhere in the 45 to 250 range. "Minor response" is defined as a 25%-50% drop in IgM; "partial response" is a sustained drop of 50% or more; and "complete response" requires that the "bad" IgM disappear altogether, and that the bone marrow shows less than 20% of the "bad" B cells. (I had 95% bad B cells at diagnosis.) Still, I'm encouraged, since at least the IgM is going in the right direction, and the rate of change is improving. Measuring the bad B cells involves taking a sample of the bone marrow, which will be done at the 6-month mark.
On the negative side, my anemia has been fluctuating and actually got to a level requiring a transfusion. The level of anemia is usually characterized by one or both of two numbers that are measured in a blood test called a "Compete Blood Count", or CBC. These numbers are the hematocrit (HCT) and the hemoglobin (HGB) level. For adult males, HCT should be in the range 42% to 54%, and HGB should be in the range 14 to 18. Shortly after diagnosis, my HCT was measured at 24.5% and HGB was 8.5 at the Dana-Farber Cancer Institute (DFCI), where my trial is running. HCT/HGB were measured as high as 29.8/8.9 at my local hematologist in June, but were measured at 21.4/7.5 at DFCI this past Monday (7/26) - that's when I got the transfusion. The study doctor had me skip the drug for two days, then resume at 7.5 mg/day.
I've learned that the CBC numbers can vary pretty dramatically between doctor's offices. At my local doctor, they put a few drops of blood into a machine about the size of a big laser printer, and it prints out a report after a few minutes. At DFCI, they do something different that involves sending many vials of blood to their lab.
Other side effects have included mouth sores, which are controllable via an oral rinse containing a steroid called dexamethasone. I've also had more bloody noses than usual (2-3 times per week, as opposed to maybe twice/year before diagnosis), and frequent muscle cramps in my leg and foot at night, although the DFCI team doesn't seem too concerned. Bananas and Powerade are controlling the cramps. I've always had eczema that comes and goes on my hands, and it seems to be more persistent right now than usual. I doubt it's connected, but who knows.
The last few days I've been noticing some tingling and numbness in my hands and fingers. This can be a side effect of the drug, and can also be a symptom resulting from the raised IgM levels. I'll need to discuss this with the trial team.
Anyway, I've been on the RAD001 trial for 2 months now, and want to catalog my experience so far. I started out taking 10 mg/day. WM is characterized by a proliferation of a particular white blood cell (a kind of "B" cell) in the bone marrow; these B cells secrete an abundance of an antibody called IgM. IgM is a normal antibody produced by the body, but when you get too much of it, your blood can get thick and viscous, which can cause all kinds of problems. Think of the thick, viscous tar balls washing up in Louisiana. Also, the WM-related IgM is not the same as the normal IgM. Anyway, the IgM level in my blood is improving. It started at 3190. After one month, it was 2990, and it is now 2640. This is a 17% overall drop, which falls into the official definition of "stable disease". In other words, if this were the end of the trial, the doctors would say it didn't work. Normal IgM levels are somewhere in the 45 to 250 range. "Minor response" is defined as a 25%-50% drop in IgM; "partial response" is a sustained drop of 50% or more; and "complete response" requires that the "bad" IgM disappear altogether, and that the bone marrow shows less than 20% of the "bad" B cells. (I had 95% bad B cells at diagnosis.) Still, I'm encouraged, since at least the IgM is going in the right direction, and the rate of change is improving. Measuring the bad B cells involves taking a sample of the bone marrow, which will be done at the 6-month mark.
On the negative side, my anemia has been fluctuating and actually got to a level requiring a transfusion. The level of anemia is usually characterized by one or both of two numbers that are measured in a blood test called a "Compete Blood Count", or CBC. These numbers are the hematocrit (HCT) and the hemoglobin (HGB) level. For adult males, HCT should be in the range 42% to 54%, and HGB should be in the range 14 to 18. Shortly after diagnosis, my HCT was measured at 24.5% and HGB was 8.5 at the Dana-Farber Cancer Institute (DFCI), where my trial is running. HCT/HGB were measured as high as 29.8/8.9 at my local hematologist in June, but were measured at 21.4/7.5 at DFCI this past Monday (7/26) - that's when I got the transfusion. The study doctor had me skip the drug for two days, then resume at 7.5 mg/day.
I've learned that the CBC numbers can vary pretty dramatically between doctor's offices. At my local doctor, they put a few drops of blood into a machine about the size of a big laser printer, and it prints out a report after a few minutes. At DFCI, they do something different that involves sending many vials of blood to their lab.
Other side effects have included mouth sores, which are controllable via an oral rinse containing a steroid called dexamethasone. I've also had more bloody noses than usual (2-3 times per week, as opposed to maybe twice/year before diagnosis), and frequent muscle cramps in my leg and foot at night, although the DFCI team doesn't seem too concerned. Bananas and Powerade are controlling the cramps. I've always had eczema that comes and goes on my hands, and it seems to be more persistent right now than usual. I doubt it's connected, but who knows.
The last few days I've been noticing some tingling and numbness in my hands and fingers. This can be a side effect of the drug, and can also be a symptom resulting from the raised IgM levels. I'll need to discuss this with the trial team.
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