Recently, I have been in contact with a fellow MM patient who has been following my blog. Steve has suffered several bouts of cancer in his life, and was diagnosed with MM 5 years ago at the age of 51. He is very interesting, because he and I have taken very different approaches to managing this disease. Steve has always opted for conservative rather than aggressive treatments for all his cancers, opting for maximum quality of life up front as a primary goal. Fortunately, this strategy has worked so far for him.
After his initial MM diagnosis, Steve went through an initial drug therapy which resulted in sCR, and then stopped all treatment for 2 1/2 years until relapse. After 3 cycles of Rev/Vel/dex, he again went into remission and stopped further treatment until now. While asymptomatic, his blood count numbers are on the rise and he will have to consider some sort of treatment again soon.
I recently sent Steve the writeup on my stem cell decision making process. While his instinct is to avoid a stem cell transplant, he agreed that given my circumstances (age, etc.), he probably would have arrived at the same decision. My treatment plan involves a consolidation phase followed by 3 years (at least) of maintenance with Revlimid. However, both Steve and his oncologist are skeptical of any long-term maintenance therapy.
One of the more controversial issues in the MM community involves the question of long-term maintenance with Revlimid. There have been 3 major Phase 3 clinical trials addressing this issue, all 3 of which were published in the May 10, 2012 issue of the New England Journal of Medicine (NEJM). Steve was kind enough to forward me pdf files of all the articles, and he is interested in my take. I was somewhat familiar with two of the studies: the French IFM study (Attal), and the CALGB study (McCarthy). Dr. Richardson was an active participant in the latter. Both of these studies involve stem cell transplants. The 3rd study was Italian (Palumbo) and involved older patients not eligible for transplants.
All three of these studies showed dramatic improvements in median progression-free survival (PFS) with long-term Revlimid maintenance versus a placebo. For the CALGB trial, the PFS was 46 months for the Rev vs. 21 months for the placebo. These results were so dramatic that all 3 studies were unblinded, and the CALGB patients on placebo were given the option to switch over to Rev (most did).
However, there is a fly in the ointment here. While the PFS numbers were dramatic, there was no corresponding increase in overall survival (OS) in two of the three studies! Only the CALGB trial showed a modest improvement in the 3-year OS rate (85% for Rev vs. 77% for placebo). It may be that longer followup times may yet establish an OS benefit to long-term Rev maintenance, but for now, these results are a bit troubling.
Most clinical trials use PFS as a desired end point, mainly because it takes much longer to establish median overall survival times. However, many are now questioning the use of PFS as an end point in clinical trials if it doesn't lead to corresponding improvements in OS.
Another issue with Revlimid maintenance is the incidence of second cancers. I have already blogged on this issue and discussed it with Dr. Richardson. All the studies showed a somewhat higher incidence of second cancers in the Rev group vs. the placebo group. In order to quantify this, a post hoc end point of event-free survival (EFS) was introduced, which added cancer events to the PFS. For the CALGB study, the EFS was 43 mos., only 3 mos. less than the PFS, still a dramatic improvement over the placebo (21 mos.). Therefore, the magnitude of benefit of Revlimid maintenance clearly seems to outweigh the risk of a second cancer.
The May 10 issue of the NEJM also published an editorial addressing these issues. In addition to the issues I mentioned above, the editorial also addressed the cost question of long-term Rev maintenance. At a list price of $450 per 10 mg tablet, the cost vs. benefit is a valid issue. At what point could Rev maintenance be suspended while still giving a long-term PFS benefit? While this is an important consideration globally, it doesn't affect me personally for now, since my Revlimid is being paid for by the clinical trial (thank goodness!).
Some of these questions may be answered in future clinical trials. In the meantime, I am comfortable with the course of treatment I am taking, at least for now. Even though an OS benefit hasn't been well established for long-term Rev maintenance, I would be very pleased to have an extended remission and not have to go back for relapse treatment any time soon.
I have responded to Steve with my detailed comments on these articles, and I welcome the dialogue Steve and I have established on these issues. It is helpful and instructive to listen to those who have chosen to take a different path. I am always trying to learn more about this infernal disease. I suspect there will be numerous decision points in my future, so I want to stay on top of all of this as best I can.
I hope this discussion hasn't bored you too much. If it has, and you still read this all the way to the end, congratulations on your perseverance.
Thursday, May 31, 2012
Thursday, May 24, 2012
Reschedule
Now that the dust has cleared from our misadventures on Tuesday, everything seems to be back on track, although there will be some delay. Apparently, I am the first patient to undergo this particular clinical trial arm at DFCI, so some paperwork never got filed in a timely way. Since there may be a week or so delay due to this oversight, Muriel decided to delay everything by two weeks and start my consolidation therapy on June 4. I don't think there is any clinical downside for this delay, so it shouldn't be any problem.
Actually, this delay falls in nicely with our travel plans for this summer. Ironically, our anniversary week is now a bye week, so we could have taken our trip to Bermuda that week after all! However, we are happy with our decision to visit Niagara Falls instead, so we are looking forward to doing that. The other good thing is that my niece's wedding in August will now also fall on a bye week, so we won't have to make any special arrangements to accommodate that. Things seem to have a way of working out!
While at DFCI on Tuesday, I asked about the timing for me to get re-staged with a bone marrow biopsy. The plan now is to wait until after my consolidation therapy. That makes sense to me, since by then the results will show the combined effect of my stem cell transplant and consolidation regimen, before I start on long-term maintenance.
In my May 19 post, I offered to email the document summarizing my stem cell decision-making process, which I have already done for a few people. However, there is now an easier way to access the document, since Pat Killingsworth today published the first of a two-part installment of my story on his blog. Here is the link: Pat Killingsworth's blog on my transplant story. He plans to post the remainder of my story tomorrow. I'm flattered that Pat chose to feature my decision process on his blog. I will be very interested in any feedback that it generates, and I hope to learn a lot more from the MM patient community about all of these treatment options.
Actually, this delay falls in nicely with our travel plans for this summer. Ironically, our anniversary week is now a bye week, so we could have taken our trip to Bermuda that week after all! However, we are happy with our decision to visit Niagara Falls instead, so we are looking forward to doing that. The other good thing is that my niece's wedding in August will now also fall on a bye week, so we won't have to make any special arrangements to accommodate that. Things seem to have a way of working out!
While at DFCI on Tuesday, I asked about the timing for me to get re-staged with a bone marrow biopsy. The plan now is to wait until after my consolidation therapy. That makes sense to me, since by then the results will show the combined effect of my stem cell transplant and consolidation regimen, before I start on long-term maintenance.
In my May 19 post, I offered to email the document summarizing my stem cell decision-making process, which I have already done for a few people. However, there is now an easier way to access the document, since Pat Killingsworth today published the first of a two-part installment of my story on his blog. Here is the link: Pat Killingsworth's blog on my transplant story. He plans to post the remainder of my story tomorrow. I'm flattered that Pat chose to feature my decision process on his blog. I will be very interested in any feedback that it generates, and I hope to learn a lot more from the MM patient community about all of these treatment options.
Wednesday, May 23, 2012
Start of Consolidation Therapy? Not!
DFCI is an amazing place, home to some of the world's best cancer researchers, oncologists, nurses, and staff. Known for its concern for its patients, you'd think this organization must operate with a smooth efficiency that would be envied the world over, right? Well, think again. As with most large entities, DFCI is afflicted with the common maladay, Snafu, or, as you all know, Situation Normal, All F***ed Up. Let me regale you with our experiences yesterday at this Mecca of cancer treatment, this supposed model of effective and efficient care.
It started as soon as we arrived. After checking in before our scheduled time of 11:00 am, we were told that the blood draw unit was backed up today. Well, that has certainly happened before. No big deal. I only had to wait half an hour for my blood draw and IV port insertion. However, that process didn't really go too well. The nurse wanted to work on a vein lower in my forearm today, so she fiddled around for a while sticking it and maneuvering it around trying to get it to work. I don't know why she didn't use the big vein near my elbow like they usually do. Last week the nurse said she could shoot that one from across the room. Anyway, after a lot of painful wiggling around of the needle, she finally got the blood she wanted, but she had go back and refill some of the tubes, which screwed up the whole process, so some of the samples had to retaken later in the day. But that was just the beginning.
As usual, my appointment with Dr. Richardson for 12:30 came and went without incident. Gretchen went to the cafeteria to bring a sandwich back to the sitting area so we wouldn't starve while we continued to wait. We finally met with Dr. Paba Prada and Muriel Gannon around 1:30 or 2:00...I kind of gave up keeping track of time by then. I wasn't too thrilled with the pathology report I got from my serum protein electrophoresis from last week. The immunofixation report showed "a faint M-spike that is not apparent on the electropherogram and, therefore, cannot be quantified". Claudia and Muriel were encouraging and said it didn't mean anything, but after everything I've been through, the last thing I wanted to see was an M-spike, however faint! Of course, Dr. Richardson was nowhere to be found, so they sent me over to infusion to get my first dose of Velcade, with the plan that he would catch up with me there.
OK, so by now it's about 3:00, and I get hooked up to get another blood draw and hydration before my push of Velcade. However, a problem arises. The Velcade order is rejected by the pharmacy because it came through saying this is day 0, when it is actually day 1. Paba Prada and Richardson have to resubmit the order for the pharmacy to act on it. However, neither of them is anywhere to be found. Physical searches are fruitless. Pagers go unanswered. They have both disappeared into Limbo. Eventually it is determined that they are in consultation with a patient. My first thought is to envy whoever it is who is able to command this much of Dr. Richardson's time. I rarely get more than 3 or 4 minutes with him at my appointments. Then I realize that the patient may have serious issues and needs that time, as I did on my first visit.
My infusion nurse, Heather, is trying her best to get this fixed. At long last, the order is corrected and sent back to the pharmacy. Richardson finally shows up, shakes my hand, tells me how good I look, and then, before he rushes out of the room, I ask him about the pathology report. He says that after a stem cell transplant, there are often lots of little blips in the blood tests as the new stem cells start to take hold, and that this is a normal reading and I shouldn't be concerned about it. OK, that makes me feel better. Then off he goes...whoosh!
By now it's after 4:00, and the pharmacy can't say how long it will be until the Velcade is available, so Gretchen and I decide to go over to BWH Floor 6b to deliver a thank you note and gift to the nurses who were so good to me during my stem cell transplant there. You know, it's frustrating for these nurses. They spend weeks getting to know patients as they go through the difficult process of a stem cell transplant, and then the patients leave and they never hear from them again. They very rarely get any closure on the patients they worked so hard on and got to know so well. It was nice to visit with them. They were thrilled to see us and were glad to hear that I am doing so well. Just a little consideration can really go a long way, and these nurses deserve it so much. I wish more patients would give them the courtesy of a followup, just to say thank you and let them know how they are doing.
Anyway, we get back to the infusion floor about 4:45, just in time to find out that the Velcade cannot be made available today! Apparently, the sponsor of the clinical trial failed to notify the pharmacy that this dose was needed today, so they can't fulfill it. Not that they don't have plenty of Velcade available, mind you. It's just that they can't use what they have to fill this prescription unless the proper paperwork is filled out (probably in triplicate or quaduplicate), and it's too late in the day for anyone to cross the i's and dot the t's. Nothing left to do now but to go home. Of course it is now the peak of rush hour.
We decide to have dinner at a local restaurant so we can chill out a little bit and avoid the rush-hour traffic home. However, because of the weather, the rush hour(s) is (are) extended, so we get the traffic anyway. C'est la vie. So ends our eventful day at Dana Farber.
Now the schedule that we have so carefully crafted with Muriel is down the poop chute. She will call me today to try to reschedule all of this. I hope it doesn't upset some of the travel plans we have already made, but it is what it is. Some days are just like that.
It started as soon as we arrived. After checking in before our scheduled time of 11:00 am, we were told that the blood draw unit was backed up today. Well, that has certainly happened before. No big deal. I only had to wait half an hour for my blood draw and IV port insertion. However, that process didn't really go too well. The nurse wanted to work on a vein lower in my forearm today, so she fiddled around for a while sticking it and maneuvering it around trying to get it to work. I don't know why she didn't use the big vein near my elbow like they usually do. Last week the nurse said she could shoot that one from across the room. Anyway, after a lot of painful wiggling around of the needle, she finally got the blood she wanted, but she had go back and refill some of the tubes, which screwed up the whole process, so some of the samples had to retaken later in the day. But that was just the beginning.
As usual, my appointment with Dr. Richardson for 12:30 came and went without incident. Gretchen went to the cafeteria to bring a sandwich back to the sitting area so we wouldn't starve while we continued to wait. We finally met with Dr. Paba Prada and Muriel Gannon around 1:30 or 2:00...I kind of gave up keeping track of time by then. I wasn't too thrilled with the pathology report I got from my serum protein electrophoresis from last week. The immunofixation report showed "a faint M-spike that is not apparent on the electropherogram and, therefore, cannot be quantified". Claudia and Muriel were encouraging and said it didn't mean anything, but after everything I've been through, the last thing I wanted to see was an M-spike, however faint! Of course, Dr. Richardson was nowhere to be found, so they sent me over to infusion to get my first dose of Velcade, with the plan that he would catch up with me there.
OK, so by now it's about 3:00, and I get hooked up to get another blood draw and hydration before my push of Velcade. However, a problem arises. The Velcade order is rejected by the pharmacy because it came through saying this is day 0, when it is actually day 1. Paba Prada and Richardson have to resubmit the order for the pharmacy to act on it. However, neither of them is anywhere to be found. Physical searches are fruitless. Pagers go unanswered. They have both disappeared into Limbo. Eventually it is determined that they are in consultation with a patient. My first thought is to envy whoever it is who is able to command this much of Dr. Richardson's time. I rarely get more than 3 or 4 minutes with him at my appointments. Then I realize that the patient may have serious issues and needs that time, as I did on my first visit.
My infusion nurse, Heather, is trying her best to get this fixed. At long last, the order is corrected and sent back to the pharmacy. Richardson finally shows up, shakes my hand, tells me how good I look, and then, before he rushes out of the room, I ask him about the pathology report. He says that after a stem cell transplant, there are often lots of little blips in the blood tests as the new stem cells start to take hold, and that this is a normal reading and I shouldn't be concerned about it. OK, that makes me feel better. Then off he goes...whoosh!
By now it's after 4:00, and the pharmacy can't say how long it will be until the Velcade is available, so Gretchen and I decide to go over to BWH Floor 6b to deliver a thank you note and gift to the nurses who were so good to me during my stem cell transplant there. You know, it's frustrating for these nurses. They spend weeks getting to know patients as they go through the difficult process of a stem cell transplant, and then the patients leave and they never hear from them again. They very rarely get any closure on the patients they worked so hard on and got to know so well. It was nice to visit with them. They were thrilled to see us and were glad to hear that I am doing so well. Just a little consideration can really go a long way, and these nurses deserve it so much. I wish more patients would give them the courtesy of a followup, just to say thank you and let them know how they are doing.
Anyway, we get back to the infusion floor about 4:45, just in time to find out that the Velcade cannot be made available today! Apparently, the sponsor of the clinical trial failed to notify the pharmacy that this dose was needed today, so they can't fulfill it. Not that they don't have plenty of Velcade available, mind you. It's just that they can't use what they have to fill this prescription unless the proper paperwork is filled out (probably in triplicate or quaduplicate), and it's too late in the day for anyone to cross the i's and dot the t's. Nothing left to do now but to go home. Of course it is now the peak of rush hour.
We decide to have dinner at a local restaurant so we can chill out a little bit and avoid the rush-hour traffic home. However, because of the weather, the rush hour(s) is (are) extended, so we get the traffic anyway. C'est la vie. So ends our eventful day at Dana Farber.
Now the schedule that we have so carefully crafted with Muriel is down the poop chute. She will call me today to try to reschedule all of this. I hope it doesn't upset some of the travel plans we have already made, but it is what it is. Some days are just like that.
Saturday, May 19, 2012
Sticker Shock
I am used to getting regular bills from DFCI, Brigham and Women's Hospital (BWH), or Blue Cross Blue Shield for various lab tests, procedures, doctor's bills, etc. Usually, the amounts are fairly small, mostly under $100. Since the amounts billed to me usually only represent 1 or 2 percent of the total amount involved, I gladly pay them, grateful that the insurance picks up the great bulk of the costs.
Usually, the bills come by snail mail, but today I got an online bill from BWH in the amount of $500. This seemed a bit steep, so I went online to check out the detailed invoice. That's when I found out how much a stem cell transplant really costs. The total charges for my 16 days in the hospital for my ASCT came to $178,662.15! For those of you who are very astute with math, you have probably already figured that that this comes to over $11,000 per day, or about $465 per hour. I would suggest that if you don't really need one of these, don't get it! Geez, even a good lawyer (not that there are many of those) doesn't cost that much. (Sorry, Terry.)
Nevertheless, my portion of these charges still only amounts to under 0.3% of that total. Thank goodness! Again, I will pay it without question, relieved that my portion wasn't much higher.
This causes one to stop and think. What happens to people who are either under-insured or have no health insurance at all? Other than throwing themselves onto the largesse of the State, what options do they have? My advice to them...don't ever get really sick. I am grateful for my Blue Cross Blue Shield Medicare Advantage Plan. They have not questioned or denied any of the expensive treatments I have received for this disease from the gitgo. I have read stories from other MM patients who have had to fight with their insurance companies to cover the costs of their treatments. Thank you, BCBS!
Not to get into politics, but I think the Massachusetts health care plan (now dubbed RomneyCare) has been a good thing, in that it requires people to have some kind of health care coverage. I also think that is a good feature of ObamaCare. For those who feel this requirement is unconstitutional and cherish individual freedom, as in the New Hampshire motto, "Live Free or Die", I would suggest that the freedom not to require health insurance is equivalent to "Live Free and die". OK, I've just stepped off the soap box. Enough of that.
As an informational note, I recently compiled a chronology of my decision-making process leading up to my stem cell transplant. I did this at the request of Pat Killingsworth, who thought it might make an interesting (or not) case study for others who may be facing this same decision. If you are interested in this, just email me at wfohalloran@gmail.com and I will be glad to send you the Word document (about 5 pages).
Usually, the bills come by snail mail, but today I got an online bill from BWH in the amount of $500. This seemed a bit steep, so I went online to check out the detailed invoice. That's when I found out how much a stem cell transplant really costs. The total charges for my 16 days in the hospital for my ASCT came to $178,662.15! For those of you who are very astute with math, you have probably already figured that that this comes to over $11,000 per day, or about $465 per hour. I would suggest that if you don't really need one of these, don't get it! Geez, even a good lawyer (not that there are many of those) doesn't cost that much. (Sorry, Terry.)
Nevertheless, my portion of these charges still only amounts to under 0.3% of that total. Thank goodness! Again, I will pay it without question, relieved that my portion wasn't much higher.
This causes one to stop and think. What happens to people who are either under-insured or have no health insurance at all? Other than throwing themselves onto the largesse of the State, what options do they have? My advice to them...don't ever get really sick. I am grateful for my Blue Cross Blue Shield Medicare Advantage Plan. They have not questioned or denied any of the expensive treatments I have received for this disease from the gitgo. I have read stories from other MM patients who have had to fight with their insurance companies to cover the costs of their treatments. Thank you, BCBS!
Not to get into politics, but I think the Massachusetts health care plan (now dubbed RomneyCare) has been a good thing, in that it requires people to have some kind of health care coverage. I also think that is a good feature of ObamaCare. For those who feel this requirement is unconstitutional and cherish individual freedom, as in the New Hampshire motto, "Live Free or Die", I would suggest that the freedom not to require health insurance is equivalent to "Live Free and die". OK, I've just stepped off the soap box. Enough of that.
As an informational note, I recently compiled a chronology of my decision-making process leading up to my stem cell transplant. I did this at the request of Pat Killingsworth, who thought it might make an interesting (or not) case study for others who may be facing this same decision. If you are interested in this, just email me at wfohalloran@gmail.com and I will be glad to send you the Word document (about 5 pages).
Thursday, May 17, 2012
ASCO Annual Meeting
The American Society of Clinical Oncologists (ASCO) holds its 2012 annual meeting June 1-5 in Chicago. This meeting, along with the ASH Annual Meeting in December, is a primary showcase for publishing advances in cancer research, including Multiple Myeloma. The abstracts for this year's ASCO meeting were posted online yesterday. Naturally I was curious, so I checked them out. For anyone interested, the website listing the myeloma related abstracts is: http://abstract.asco.org/CatAbstView_114_116_AA.html
As expected, there are several papers on the MLN9708 clinical trials. Unfortunately, the abstracts for this conference were submitted last December, so no new results are available for my MLN9708 clinical trial beyond what I reported on in my post of Dec. 14, 2011. Dr. Richardson will be presenting updated results for this trial at the meeting, so I will report on them after his presentation.
Looking at the other MM presentations, I was impressed with some of the excellent results coming from some of the other clinical trials, particularly, the carfilzomib trials. This proteasome inhibitor is a potential replacement for Velcade, without the peripheral neuropathy side effects of Velcade. The clinical results so far compare favorably to Velcade, and the FDA seems poised to approve this drug soon. Onyx Pharmaceuticals has already chosen the trade name Kyprolis for carfilzomib (only slightly more pronounceable), anticipating an early approval from the FDA.
Good results will also be presented for pomalidomide, a potential replacement for Revlimid that also is on a good track for FDA approval sometime in the foreseeable future. Clinical results for other promising new MM therapies, such as elotuzomab, will be presented as well. I plan to track this conference and share any new breakthrough information that comes from these presentations. Stay tuned.
Every day, I have to take a formidable array of prescription drugs and supplements to keep this disease, treatment side effects, and potential complications under control. Here is a picture of the pills I laid out on the counter this morning, including my normal blood pressure and cholesterol meds. I actually have several more supplements that I can take, but these are already enough to choke a horse. Hey, as long as they keep working, I have no problem with this.
I was thinking of having a contest. Whoever can correctly identify all these pills would get a free hard-bound copy of the Merck Index, along with an all-expense-paid trip from anywhere in the Boston area to the world-renowned Dana Farber Cancer Institute, including free parking and lunch at the cafeteria. I could show the winner around, since I know the place so well.
As expected, there are several papers on the MLN9708 clinical trials. Unfortunately, the abstracts for this conference were submitted last December, so no new results are available for my MLN9708 clinical trial beyond what I reported on in my post of Dec. 14, 2011. Dr. Richardson will be presenting updated results for this trial at the meeting, so I will report on them after his presentation.
Looking at the other MM presentations, I was impressed with some of the excellent results coming from some of the other clinical trials, particularly, the carfilzomib trials. This proteasome inhibitor is a potential replacement for Velcade, without the peripheral neuropathy side effects of Velcade. The clinical results so far compare favorably to Velcade, and the FDA seems poised to approve this drug soon. Onyx Pharmaceuticals has already chosen the trade name Kyprolis for carfilzomib (only slightly more pronounceable), anticipating an early approval from the FDA.
Good results will also be presented for pomalidomide, a potential replacement for Revlimid that also is on a good track for FDA approval sometime in the foreseeable future. Clinical results for other promising new MM therapies, such as elotuzomab, will be presented as well. I plan to track this conference and share any new breakthrough information that comes from these presentations. Stay tuned.
Every day, I have to take a formidable array of prescription drugs and supplements to keep this disease, treatment side effects, and potential complications under control. Here is a picture of the pills I laid out on the counter this morning, including my normal blood pressure and cholesterol meds. I actually have several more supplements that I can take, but these are already enough to choke a horse. Hey, as long as they keep working, I have no problem with this.
I was thinking of having a contest. Whoever can correctly identify all these pills would get a free hard-bound copy of the Merck Index, along with an all-expense-paid trip from anywhere in the Boston area to the world-renowned Dana Farber Cancer Institute, including free parking and lunch at the cafeteria. I could show the winner around, since I know the place so well.
Tuesday, May 15, 2012
Continued Progress
The various supplement and emollient therapies I have been using for
my peripheral neuropathy seem to be working their magic. My symptoms
have diminished noticeably, especially when I go to bed at night after
applying the cocoa butter to my feet. It's very soothing.
I went into DFCI today for blood tests and to meet with the medical team. My blood counts continue to show improvement. The only number that went down was my White Blood Cell count, but nobody seemed concerned about it. Everyone thinks I'm doing great, and therefore so do I. I thought I was going to get a lot of tests to re-stage my status, but they don't think I need to do that. Not that I will miss having a bone marrow biopsy taken, but I was curious as to whether I have achieved a stringent Complete Response from the stem cell transplant. However, I'm not going to lobby aggressively to have them stick a big needle my hip bone to find out.
I'm good to go for starting my consolidation therapy next week (May 22). I also found out some good news I wasn't expecting. The clinical trial I am on will pay for all the drugs I will be getting, including the Revlimid! That's really great, especially since I'm supposed to take Rev for the next 3 years. Even with Medicare picking up a huge chunk of the costs, that will save us a lot of $$. I think I'm going to stick with this clinical trial.
Speaking of Revlimid, I broached the secondary cancer issue that I mentioned in my last post to Dr. Richardson. He explained that the FDA announcement did not take into account some of the important variables in the studies they reviewed. In particular, most of the patients who showed increased second cancer risk had taken heavy duty chemotherapy drugs in addition to the Revlimid. He contends that this combination is what increases the cancer risk, not the Revlimid alone. Based on the minimal chemotherapy I have taken (one dose of cytoxan and 2 doses of melphalan), he thinks my chances of a second cancer are no more than 3 or 4%, not the 8% referred to in the FDA release. This number is the typical risk of second cancers for all Multiple Myeloma patients. As usual, he seems to really know of what he speaks, and he allayed my concerns greatly.
My schedule for the next three months is pretty full, since I will have to go into DFCI for Velcade infusions twice a week (Tuesdays and Fridays) for two weeks out of every three for the next 12 weeks. Projecting the schedule out, there were a few conflicts that I wanted to deal with. There are three time periods that I would like to have free: the week of Tuesday, June 19 (our 25th anniversary), the week of July 4 (to visit the farm in New York), and Friday, August 3 (my niece Meghan's wedding in PA). Unfortunately, the schedule works out so that none of those weeks corresponds to one of my weeks off. Ratsafrats! Therefore, I have to resort to creative scheduling.
For our anniversary week, Bermuda just won't work. That's really OK, since it would be really expensive, and Gretchen and I both agree that we should save our trips to warm places for the winter time. Gretchen suggested we go to Niagara Falls instead. I thought that was a great idea, since I've never been there and it's on my bucket list anyway. Therefore, I will schedule an early morning appointment at Dana Farber on Tuesday, June 19. Then we will take an afternoon flight to Niagara Falls and return on June 21, so I can be at DFCI on Friday the 22nd. Serendipitously, JetBlue is offering a special $49 fare today only from Boston to Buffalo! I booked it tonight, so that problem is solved.
Since July 4 is in the middle of the week this year, I will just plan to be at the farm over the weekend before (or after) instead of during the week. As for Meghan's wedding, I will work to move the scheduling of the fourth consolidation cycle to Monday-Thursday instead of Tuesday-Friday, so we can leave for Pennsylvania on Thursday, August 2, and be there for the wedding. Muriel agreed today to try to accommodate these changes, so we should be all set.
It's all good.
I went into DFCI today for blood tests and to meet with the medical team. My blood counts continue to show improvement. The only number that went down was my White Blood Cell count, but nobody seemed concerned about it. Everyone thinks I'm doing great, and therefore so do I. I thought I was going to get a lot of tests to re-stage my status, but they don't think I need to do that. Not that I will miss having a bone marrow biopsy taken, but I was curious as to whether I have achieved a stringent Complete Response from the stem cell transplant. However, I'm not going to lobby aggressively to have them stick a big needle my hip bone to find out.
I'm good to go for starting my consolidation therapy next week (May 22). I also found out some good news I wasn't expecting. The clinical trial I am on will pay for all the drugs I will be getting, including the Revlimid! That's really great, especially since I'm supposed to take Rev for the next 3 years. Even with Medicare picking up a huge chunk of the costs, that will save us a lot of $$. I think I'm going to stick with this clinical trial.
Speaking of Revlimid, I broached the secondary cancer issue that I mentioned in my last post to Dr. Richardson. He explained that the FDA announcement did not take into account some of the important variables in the studies they reviewed. In particular, most of the patients who showed increased second cancer risk had taken heavy duty chemotherapy drugs in addition to the Revlimid. He contends that this combination is what increases the cancer risk, not the Revlimid alone. Based on the minimal chemotherapy I have taken (one dose of cytoxan and 2 doses of melphalan), he thinks my chances of a second cancer are no more than 3 or 4%, not the 8% referred to in the FDA release. This number is the typical risk of second cancers for all Multiple Myeloma patients. As usual, he seems to really know of what he speaks, and he allayed my concerns greatly.
My schedule for the next three months is pretty full, since I will have to go into DFCI for Velcade infusions twice a week (Tuesdays and Fridays) for two weeks out of every three for the next 12 weeks. Projecting the schedule out, there were a few conflicts that I wanted to deal with. There are three time periods that I would like to have free: the week of Tuesday, June 19 (our 25th anniversary), the week of July 4 (to visit the farm in New York), and Friday, August 3 (my niece Meghan's wedding in PA). Unfortunately, the schedule works out so that none of those weeks corresponds to one of my weeks off. Ratsafrats! Therefore, I have to resort to creative scheduling.
For our anniversary week, Bermuda just won't work. That's really OK, since it would be really expensive, and Gretchen and I both agree that we should save our trips to warm places for the winter time. Gretchen suggested we go to Niagara Falls instead. I thought that was a great idea, since I've never been there and it's on my bucket list anyway. Therefore, I will schedule an early morning appointment at Dana Farber on Tuesday, June 19. Then we will take an afternoon flight to Niagara Falls and return on June 21, so I can be at DFCI on Friday the 22nd. Serendipitously, JetBlue is offering a special $49 fare today only from Boston to Buffalo! I booked it tonight, so that problem is solved.
Since July 4 is in the middle of the week this year, I will just plan to be at the farm over the weekend before (or after) instead of during the week. As for Meghan's wedding, I will work to move the scheduling of the fourth consolidation cycle to Monday-Thursday instead of Tuesday-Friday, so we can leave for Pennsylvania on Thursday, August 2, and be there for the wedding. Muriel agreed today to try to accommodate these changes, so we should be all set.
It's all good.
Wednesday, May 9, 2012
Revlimid Secondary Cancer Risk
Today I came across some information that puts my hairless pate issue onto the back burner. A recent article in the Myeloma Beacon (see Helpful Links on the side bar of this page) reveals that the FDA has issued an extensive update about Revlimid (lenalidomide) and second cancers.
Here is a highlight from the article as it affects my situation:
"The new Food and Drug Administration’s analyses show that newly diagnosed multiple myeloma patients treated with Revlimid maintenance therapy after stem cell transplantation are three times more likely to develop a second cancer than patients who do not receive Revlimid maintenance.
Data from three ongoing clinical trials show so far that 7.9 percent of newly diagnosed patients receiving Revlimid maintenance have developed a second cancer, compared to 2.8 percent of patient who received a placebo. Patients receiving Revlimid were more likely to develop acute myelogenous leukemia, myelodysplastic syndromes, and Hodgkin’s lymphoma. The median time from start of Revlimid treatment till diagnosis of a second cancer was two years."
Here is a link to the full article: http://www.myelomabeacon.com/news/2012/05/07/fda-issues-extensive-update-about-revlimid-lenalidomide-and-second-cancers/
Now that has gotten my attention! In February, I completed 7 cycles of RVD (Revlimid, Velcade, dexamethasone) induction therapy, which involved taking 25 mg of Revlimid for 21 days out of each 28-day cycle. Now, as a followup to my stem cell transplant, I am scheduled to receive 4 more cycles of RVD consolidation therapy, which will involve taking 15 mg of Revlimid for 14 days out of each 21-day cycle. Then, the plan is for me to go on a Revlimid maintenance therapy, which will involve taking 10-15 mg of Revlimid only on a daily basis for the next three years (emphasis mine).
That's a lot of Revlimid! You might ask whether I plan to bring this issue to Dr. Richardson's attention during my DFCI visit next week. To borrow a phrase from a former Vice Presidential candidate, "You betcha!".
Here is a highlight from the article as it affects my situation:
"The new Food and Drug Administration’s analyses show that newly diagnosed multiple myeloma patients treated with Revlimid maintenance therapy after stem cell transplantation are three times more likely to develop a second cancer than patients who do not receive Revlimid maintenance.
Data from three ongoing clinical trials show so far that 7.9 percent of newly diagnosed patients receiving Revlimid maintenance have developed a second cancer, compared to 2.8 percent of patient who received a placebo. Patients receiving Revlimid were more likely to develop acute myelogenous leukemia, myelodysplastic syndromes, and Hodgkin’s lymphoma. The median time from start of Revlimid treatment till diagnosis of a second cancer was two years."
Here is a link to the full article: http://www.myelomabeacon.com/news/2012/05/07/fda-issues-extensive-update-about-revlimid-lenalidomide-and-second-cancers/
Now that has gotten my attention! In February, I completed 7 cycles of RVD (Revlimid, Velcade, dexamethasone) induction therapy, which involved taking 25 mg of Revlimid for 21 days out of each 28-day cycle. Now, as a followup to my stem cell transplant, I am scheduled to receive 4 more cycles of RVD consolidation therapy, which will involve taking 15 mg of Revlimid for 14 days out of each 21-day cycle. Then, the plan is for me to go on a Revlimid maintenance therapy, which will involve taking 10-15 mg of Revlimid only on a daily basis for the next three years (emphasis mine).
That's a lot of Revlimid! You might ask whether I plan to bring this issue to Dr. Richardson's attention during my DFCI visit next week. To borrow a phrase from a former Vice Presidential candidate, "You betcha!".
Tuesday, May 8, 2012
This and That
Today I got a tentative schedule from DFCI. I go in for my testing next Tuesday, and then Cycle 1 of the consolidation therapy begins the following Tuesday, May 22. It all seems to be happening very quickly.
Based on the Cycle 1 starting date, it is becoming apparent that I won't have the third week of June off. That means I have to cancel our hotel reservations for Bermuda, since I will have to be at Dana Farber for an infusion session on June 19 (our 25th anniversary). :-( Oh well...I could try to have them change things around, but we have decided to just go with the flow on this. Instead of Bermuda, perhaps Gretchen and I could take a couple of days to go to Boothbay Harbor, Maine. That would be nice too.
I have started taking various supplements to deal with my peripheral neuropathy. These include Fish Oil, Vitamin B-6, amino acids, and cocoa butter. I haven't noticed any improvement yet, but it's only been a few days. I've been rubbing the cocoa butter on my feet at night, and that is quite soothing.
It looks like I'd better hold off on that garage sale on my extra hats. I seemed to have jumped the gun on thinking that my hair was growing back. Since my April 18 post, when I thought it had started to grow? Nada, niente, zilch, nothing at all. Sigh. I keep looking in the mirror, but there is no change. I just have to be patient. Maybe a little Miracle Grow would help?
As I said, I don't like the Yul Brynner look. People tell me that I look fine, but you know, people are going to say that. A week or so ago, I was on a Face Time video call on my iPhone with my grandson, Logan. He had just had his hair cut, so I removed my hat to show him Grandpa's "haircut". He reacted with shock, and almost started to cry. I quickly put my hat back on. The truth is reflected in a child's eyes.
But this is such a minor issue. In the meantime, I'm still feeling good, which is all that matters.
Based on the Cycle 1 starting date, it is becoming apparent that I won't have the third week of June off. That means I have to cancel our hotel reservations for Bermuda, since I will have to be at Dana Farber for an infusion session on June 19 (our 25th anniversary). :-( Oh well...I could try to have them change things around, but we have decided to just go with the flow on this. Instead of Bermuda, perhaps Gretchen and I could take a couple of days to go to Boothbay Harbor, Maine. That would be nice too.
I have started taking various supplements to deal with my peripheral neuropathy. These include Fish Oil, Vitamin B-6, amino acids, and cocoa butter. I haven't noticed any improvement yet, but it's only been a few days. I've been rubbing the cocoa butter on my feet at night, and that is quite soothing.
It looks like I'd better hold off on that garage sale on my extra hats. I seemed to have jumped the gun on thinking that my hair was growing back. Since my April 18 post, when I thought it had started to grow? Nada, niente, zilch, nothing at all. Sigh. I keep looking in the mirror, but there is no change. I just have to be patient. Maybe a little Miracle Grow would help?
As I said, I don't like the Yul Brynner look. People tell me that I look fine, but you know, people are going to say that. A week or so ago, I was on a Face Time video call on my iPhone with my grandson, Logan. He had just had his hair cut, so I removed my hat to show him Grandpa's "haircut". He reacted with shock, and almost started to cry. I quickly put my hat back on. The truth is reflected in a child's eyes.
But this is such a minor issue. In the meantime, I'm still feeling good, which is all that matters.
Wednesday, May 2, 2012
Back to Dana Farber
After a couple of dry spells lately when I didn't update my blog for up to a week, I am now subjecting you to my third post in as many days. Oh well, it is what it is.
Today we went in to see Dr. Richardson for the first time in three weeks. My blood test results came back great! The white blood cell count stayed about the same, a little below normal range, and my platelet count was also steady and within the normal range. The hematocrit and hemoglobin both increased, so my anemia is slowly improving. I'm not surprised, since I have more energy and I haven't been as tired lately. However, Dr. Paba Prada said that it will take a long time for these numbers to get back into the normal range. Most of the other results were either normal or not a cause for alarm. They drew blood to perform an electrophoresis/immunofixation test for the M Spike, but those results won't be back for a few days. I would be shocked if an M Spike could be detected after all I've been through lately.
Because of my progress, some of the restrictions I have been living with can be lifted. For example, I can now visit with my grandson Logan, so we can go ahead and schedule that for sometime this month. Also, I was cleared to play golf (as long as I don't smoke cigars), move around more freely in public, eat more raw fruits and vegetables (if they're washed and prepared at home), and even travel by plane soon! I should still avoid gardening and mowing the lawn. I should also avoid undercooked meat and fish, at least for the next few weeks. This is great news, as I can now resume an almost normal life. This is far sooner than I would have thought possible.
The doctors and Muriel, the transplant nurse, were all pleasantly surprised by how well I am doing. I seem to be the poster child for how to respond to these treatments...well, poster geezer might be a more accurate description. ;-)
I broached the subject of my Peripheral Neuropathy (PN) to Paba Prada and Richardson. Surprisingly, they didn't have that issue on their radar from my previous visits, although I have mentioned it before. I think I was more emphatic about it this time. Claudia also said that PN usually gets worse for most patients after a stem cell transplant, which corresponds to my experience. It turns out that there are a number of things that can be done to mitigate PN, and they gave me a packet with suggestions. These include Vitamin B6, cocoa butter, and some other supplements that I plan to try soon. They want me to start immediately, because they would like for it to subside before I start my Consolidation Therapy in a few weeks.
Dr. Richardson was also very responsive to my concern about the PN side effects of the Velcade that I will soon be taking. He plans to monitor this closely, and he will adjust the Velcade dose accordingly if PN becomes an issue. I was very pleased with how they responded to my concerns about PN, so I am feeling much more comfortable with the whole situation.
The next step is for me to come back in a couple of weeks to get a full set of tests, including another bone biopsy (yippee), to assess the status of my MM. Muriel said she would be surprised if I haven't achieved a stringent Complete Response (sCR)! Wow, that's setting the expectation bar a bit high. Wouldn't that be nice, though?
After this re-staging process, the Consolidation Therapy protocol will probably start in another week or so. None of this has been scheduled yet, but I will probably start the protocol near the end of May. This will consist of four 3-week cycles, where I go into DFCI for Velcade infusions twice a week for the first two weeks of each cycle, and then take the third week off. Muriel even offered the possibility that it could be scheduled such that our 25th Anniversary week (June 19) is one of the weeks off. That would be nice, but we aren't going to push for that to happen. If it does, it does. They've already jumped through enough hoops accommodating our vacation schedules.
Today we went in to see Dr. Richardson for the first time in three weeks. My blood test results came back great! The white blood cell count stayed about the same, a little below normal range, and my platelet count was also steady and within the normal range. The hematocrit and hemoglobin both increased, so my anemia is slowly improving. I'm not surprised, since I have more energy and I haven't been as tired lately. However, Dr. Paba Prada said that it will take a long time for these numbers to get back into the normal range. Most of the other results were either normal or not a cause for alarm. They drew blood to perform an electrophoresis/immunofixation test for the M Spike, but those results won't be back for a few days. I would be shocked if an M Spike could be detected after all I've been through lately.
Because of my progress, some of the restrictions I have been living with can be lifted. For example, I can now visit with my grandson Logan, so we can go ahead and schedule that for sometime this month. Also, I was cleared to play golf (as long as I don't smoke cigars), move around more freely in public, eat more raw fruits and vegetables (if they're washed and prepared at home), and even travel by plane soon! I should still avoid gardening and mowing the lawn. I should also avoid undercooked meat and fish, at least for the next few weeks. This is great news, as I can now resume an almost normal life. This is far sooner than I would have thought possible.
The doctors and Muriel, the transplant nurse, were all pleasantly surprised by how well I am doing. I seem to be the poster child for how to respond to these treatments...well, poster geezer might be a more accurate description. ;-)
I broached the subject of my Peripheral Neuropathy (PN) to Paba Prada and Richardson. Surprisingly, they didn't have that issue on their radar from my previous visits, although I have mentioned it before. I think I was more emphatic about it this time. Claudia also said that PN usually gets worse for most patients after a stem cell transplant, which corresponds to my experience. It turns out that there are a number of things that can be done to mitigate PN, and they gave me a packet with suggestions. These include Vitamin B6, cocoa butter, and some other supplements that I plan to try soon. They want me to start immediately, because they would like for it to subside before I start my Consolidation Therapy in a few weeks.
Dr. Richardson was also very responsive to my concern about the PN side effects of the Velcade that I will soon be taking. He plans to monitor this closely, and he will adjust the Velcade dose accordingly if PN becomes an issue. I was very pleased with how they responded to my concerns about PN, so I am feeling much more comfortable with the whole situation.
The next step is for me to come back in a couple of weeks to get a full set of tests, including another bone biopsy (yippee), to assess the status of my MM. Muriel said she would be surprised if I haven't achieved a stringent Complete Response (sCR)! Wow, that's setting the expectation bar a bit high. Wouldn't that be nice, though?
After this re-staging process, the Consolidation Therapy protocol will probably start in another week or so. None of this has been scheduled yet, but I will probably start the protocol near the end of May. This will consist of four 3-week cycles, where I go into DFCI for Velcade infusions twice a week for the first two weeks of each cycle, and then take the third week off. Muriel even offered the possibility that it could be scheduled such that our 25th Anniversary week (June 19) is one of the weeks off. That would be nice, but we aren't going to push for that to happen. If it does, it does. They've already jumped through enough hoops accommodating our vacation schedules.
Tuesday, May 1, 2012
Tom's Transplant Story
The first day I went in to Brigham and Women's Hospital to have my stem cells harvested, another patient was in the waiting room. He was called in before me, and I noticed him struggling to stand up. He tried without success to take off his jacket, so the woman with him had to help him remove it. As he shuffled into the ward, I felt really bad for him.
I ended up in the bed next to his, so over the next two days I got to know him a little. His name is George, but his friends call him Tom. He is a bit younger than I at 68, and he was diagnosed with Multiple Myeloma last August. Unfortunately, he was in Stage 3 when diagnosed, and he had suffered significant bone damage. The reason Tom wasn't feeling well was that he had contracted a bad infection and had spent the previous three days in the hospital. His doctor had considered delaying the transplant, but then decided to go ahead on schedule.
Tom's partner, Ellen, is a very nice woman. Both of them had lost their spouses, and they have been together for the last 6 years. Ellen's husband died of cancer and had undergone a stem cell transplant, so this was deja vu all over again for her. I was feeling bad for both of them.
Tom and I didn't talk too much, since we are both hard of hearing. (Eh? What?) However, I learned that he was scheduled to go in for his transplant three days after me. We talked of trying to get onto the same floor for our transplants so we could see each other. He has a good sense of humor, so he said if we don't get on the same floor, we could meet on the court during the inter-floor basketball game.
We didn't get on the same floor, but Gretchen did go to visit Tom while we were both there. (We missed out on the basketball game.) We had exchanged email addresses, so we tried to stay in touch. However, I didn't hear from him for a while, so I became worried about him. The day after I got home, I finally got an email from Ellen saying that Tom was having a really rough time. He suffered a mini stroke in the hospital and got a bad blood infection with a fever. He had become delirious and was on antibiotics. He also had to have multiple blood and platelet transfusions. On top of that, he had bad mouth sores, as well as skin sores all over his body. Gulp!
Needless to say, Tom didn't go home early. In fact he was in the hospital a couple of extra days and got home on Easter Sunday. Again I didn't hear from him for a while, and I started worrying again. Ellen then emailed me that they had a VNA nurse coming in and that Tom had to continue taking serious antibiotics through a picc line. His white blood cell and platelet counts were still low, and he continued to be disoriented.
Since then, I have had several emails from Tom. Fortunately, he is starting to recover and his blood counts are going back up. Thank goodness! But because of the infection, his recuperation time will be much longer. Last week, he was bummed out because the doctor told him he couldn't get close to his grandchildren for another 8 weeks. I just heard from him again today. His biggest problem now is shortness of breath, even when bends over to tie his shoes. He has also lost 17 pounds since his transplant!
You know, this really doesn't seem fair. Why is Tom having such a tough row to hoe, while I seem to be recovering just fine? My heart goes out to him. I almost feel guilty telling him that I am doing great while he is struggling so. Gretchen and I would like to go visit Tom and Ellen sometime soon. I think Gretchen and Ellen would get along and perhaps have things to share as caregivers.
In the meantime, I continue to be thankful. If I forget to be thankful, all I have to do is think about Tom.
I ended up in the bed next to his, so over the next two days I got to know him a little. His name is George, but his friends call him Tom. He is a bit younger than I at 68, and he was diagnosed with Multiple Myeloma last August. Unfortunately, he was in Stage 3 when diagnosed, and he had suffered significant bone damage. The reason Tom wasn't feeling well was that he had contracted a bad infection and had spent the previous three days in the hospital. His doctor had considered delaying the transplant, but then decided to go ahead on schedule.
Tom's partner, Ellen, is a very nice woman. Both of them had lost their spouses, and they have been together for the last 6 years. Ellen's husband died of cancer and had undergone a stem cell transplant, so this was deja vu all over again for her. I was feeling bad for both of them.
Tom and I didn't talk too much, since we are both hard of hearing. (Eh? What?) However, I learned that he was scheduled to go in for his transplant three days after me. We talked of trying to get onto the same floor for our transplants so we could see each other. He has a good sense of humor, so he said if we don't get on the same floor, we could meet on the court during the inter-floor basketball game.
We didn't get on the same floor, but Gretchen did go to visit Tom while we were both there. (We missed out on the basketball game.) We had exchanged email addresses, so we tried to stay in touch. However, I didn't hear from him for a while, so I became worried about him. The day after I got home, I finally got an email from Ellen saying that Tom was having a really rough time. He suffered a mini stroke in the hospital and got a bad blood infection with a fever. He had become delirious and was on antibiotics. He also had to have multiple blood and platelet transfusions. On top of that, he had bad mouth sores, as well as skin sores all over his body. Gulp!
Needless to say, Tom didn't go home early. In fact he was in the hospital a couple of extra days and got home on Easter Sunday. Again I didn't hear from him for a while, and I started worrying again. Ellen then emailed me that they had a VNA nurse coming in and that Tom had to continue taking serious antibiotics through a picc line. His white blood cell and platelet counts were still low, and he continued to be disoriented.
Since then, I have had several emails from Tom. Fortunately, he is starting to recover and his blood counts are going back up. Thank goodness! But because of the infection, his recuperation time will be much longer. Last week, he was bummed out because the doctor told him he couldn't get close to his grandchildren for another 8 weeks. I just heard from him again today. His biggest problem now is shortness of breath, even when bends over to tie his shoes. He has also lost 17 pounds since his transplant!
You know, this really doesn't seem fair. Why is Tom having such a tough row to hoe, while I seem to be recovering just fine? My heart goes out to him. I almost feel guilty telling him that I am doing great while he is struggling so. Gretchen and I would like to go visit Tom and Ellen sometime soon. I think Gretchen and Ellen would get along and perhaps have things to share as caregivers.
In the meantime, I continue to be thankful. If I forget to be thankful, all I have to do is think about Tom.
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