Hello all,
It's been a little over 2 years since my autologous transplant and I go in for my next blood test in a little under a week from now, and I've been reading into maintenance therapy. I achieved a complete response, and so far all my tests have been good, but I am currently 29 (right before my 26th birthday at time of diagnosis), so my thought process is that I am young enough to handle the chemo and I would most certainly like to maintain my response / progression free status as I'm in my final year of college and a relapse at that critical time between graduating and settling into a new job would be devastating.
I'm just not sure if these are good enough reasons to do it, though, so I would love some advice from those who have been in a similar situation. My professional life was already pretty ruined with my first diagnosis, so I really hate the current "wait and see" approach my oncologist has us doing. He bandies about the word "cure," but I'm pretty certain I'm not the guy who's magically never going to relapse for the next 60 years.
Any advice or suggestions would be welcome. Thank you for your time.
Forums
6 posts
• Page 1 of 1
-
Shwan - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 30, 2012
- Age at diagnosis: 25
Re: Should I start maintenance therapy?
Hi Schwan,
Welcome to the forum. I'm very sorry to hear that you were diagnosed at such a young age.
It seems to be very common these days for myeloma patients to go on maintenance therapy after a stem cell transplant. Revlimid used to be the preferred maintenance drug in the U.S., but Velcade is being used more and more, particularly for patients with higher-risk chromosomal abnormalities at diagnosis. You will also hear of patients with high-risk chromosomal abnormalities going on a three-drug maintenance regimen, such as RVD.
Maintenance is also a topic that comes up often here in the forum, and you can probably learn a lot by just reading through the different threads on the topic. This link will take you to a reasonably comprehensive list of all the discussions on the subject.
This is one of the links in a forum posting you definitely should look at some time, which is this one:
"Useful links to existing forum discussions" (posted Aug 3, 2014; regularly updated)
It has links to discussions on many different treatments, types of treatment, and side effects.
Also, you can find articles here at the Beacon about maintenance by going to the maintenance topic page.
Personally, at your age, and if you're in good health right now, I would press your doctor (who I hope is a myeloma specialist) to explain in detail why she/he feels that maintenance therapy will improve both your quality of life and your expected long-term prognosis. I also would have doubts about a doctor who lightly bandies about the word "cure" for his / her patients. It's a great marketing gimmick, and a couple treatment centers use the word a lot precisely because it's a great way to grab the attention of patients and caregivers. I respect a doctor more, however, if he or she uses it in very specific contexts.
Good luck!
Welcome to the forum. I'm very sorry to hear that you were diagnosed at such a young age.
It seems to be very common these days for myeloma patients to go on maintenance therapy after a stem cell transplant. Revlimid used to be the preferred maintenance drug in the U.S., but Velcade is being used more and more, particularly for patients with higher-risk chromosomal abnormalities at diagnosis. You will also hear of patients with high-risk chromosomal abnormalities going on a three-drug maintenance regimen, such as RVD.
Maintenance is also a topic that comes up often here in the forum, and you can probably learn a lot by just reading through the different threads on the topic. This link will take you to a reasonably comprehensive list of all the discussions on the subject.
This is one of the links in a forum posting you definitely should look at some time, which is this one:
"Useful links to existing forum discussions" (posted Aug 3, 2014; regularly updated)
It has links to discussions on many different treatments, types of treatment, and side effects.
Also, you can find articles here at the Beacon about maintenance by going to the maintenance topic page.
Personally, at your age, and if you're in good health right now, I would press your doctor (who I hope is a myeloma specialist) to explain in detail why she/he feels that maintenance therapy will improve both your quality of life and your expected long-term prognosis. I also would have doubts about a doctor who lightly bandies about the word "cure" for his / her patients. It's a great marketing gimmick, and a couple treatment centers use the word a lot precisely because it's a great way to grab the attention of patients and caregivers. I respect a doctor more, however, if he or she uses it in very specific contexts.
Good luck!
-
JimNY
Re: Should I start maintenance therapy?
Schwan -
Another thing to consider is that it's unlikely that you will relapse with such disastrous results as when you were first diagnosed. If you are being followed on a regular basis with a full complement of bloodwork, changes in your status should be recognized before things get bad. You also will notice when things aren't going well and hopefully would be in contact with your doctor quickly.
When I relapsed it came slowly. My oncologist had set a benchmark for my bloodwork as to when he would recommend restarting treatment. My numbers increased gradually over 18 months and then exceeded the level that my oncologist had set. I wasn't feeling awful at the time, but I could tell that things had changed. I restarted treatment with no interruption to my work or personal life. The treatment quickly brought all of my numbers back to within a good range and have remained there for over 2 1/2 years.
So, starting treatment again right now when you are in a good response may not be needed. But, you are quite young and you may respond over time very differently from those of us who are over 60. This is such a quirky disease to deal with that it's difficult to really decide what is the right way to go at any time.
Do your research, which I know you are, get a second opinion from another oncologist who is a myeloma specialist and go with what you feel is the best path for you.
Nancy in Phila
Another thing to consider is that it's unlikely that you will relapse with such disastrous results as when you were first diagnosed. If you are being followed on a regular basis with a full complement of bloodwork, changes in your status should be recognized before things get bad. You also will notice when things aren't going well and hopefully would be in contact with your doctor quickly.
When I relapsed it came slowly. My oncologist had set a benchmark for my bloodwork as to when he would recommend restarting treatment. My numbers increased gradually over 18 months and then exceeded the level that my oncologist had set. I wasn't feeling awful at the time, but I could tell that things had changed. I restarted treatment with no interruption to my work or personal life. The treatment quickly brought all of my numbers back to within a good range and have remained there for over 2 1/2 years.
So, starting treatment again right now when you are in a good response may not be needed. But, you are quite young and you may respond over time very differently from those of us who are over 60. This is such a quirky disease to deal with that it's difficult to really decide what is the right way to go at any time.
Do your research, which I know you are, get a second opinion from another oncologist who is a myeloma specialist and go with what you feel is the best path for you.
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Should I start maintenance therapy?
I haven't posted here in a while, but this one I can definitely relate to. I was diagnosed at 37, so to speak in the peak of my professional career. The myeloma diagnosis made me re-evaluate my future career prospects, although I continue to work - not sure for how long. Considering that current long-term survival (i.e. over 10 years) is at around 10% ("Long-term survival in multiple myeloma," Cristina Joao et al), a young person has to make some hard decisions regarding future career plans. Maintenance therapy is one of those decisions.
What you have to balance here is the choice of possibly bettering your PFS and OS with the risk of possibly deteriorated performance at work. If you ask me, the former is far more important than the latter. My choice was to go on maintenance, in my case, Revlimid (initially 15 mg, down to 10 mg). If you decide to go that path, you need to look at the side effects people have reported, and you need to think how this might affect your future career plans (there are various discussions here regarding side effects). If you are put on something else other than Rev, obviously you need to look into the side effects of that specific medication.
In my mind, long-term side effects on these novel maintenance treatments are not that well studied. When you have this combined with your prior medical history, and there is no telling what your particular state could be. You can do great and perform without a glitch. On the other hand, you may experience fatigue, reduced cognitive abilities and so on. If you end up in a highly intellectual job, cognitive abilities, fatigue, nausea, depression and so on could affect your viability as a member of a highly competitive, results-driven team. Again, all of this may not be an issue in your case - you are a lot younger than me, but it is something to consider.
Long story short, go look into the maintenance links on this website and read the referenced studies. If my memory serves me well, there is material evidence in favor of maintenance.
There is one key thing in what you wrote, however. It appears that you have had stable disease for a while without maintenance. That alone may favor against rocking the boat and changing things. I believe most people are put on maintenance therapy after some induction protocol, not out of the blue.
I apologize if I cannot offer specific advice because these issues are something you and your doctor have to ultimately decide, but I wanted to flag the possible side effect issues of maintenance and the fact that it appears you are doing OK without maintenance (which is huge and many of us would be extremely happy to be in that state).
What you have to balance here is the choice of possibly bettering your PFS and OS with the risk of possibly deteriorated performance at work. If you ask me, the former is far more important than the latter. My choice was to go on maintenance, in my case, Revlimid (initially 15 mg, down to 10 mg). If you decide to go that path, you need to look at the side effects people have reported, and you need to think how this might affect your future career plans (there are various discussions here regarding side effects). If you are put on something else other than Rev, obviously you need to look into the side effects of that specific medication.
In my mind, long-term side effects on these novel maintenance treatments are not that well studied. When you have this combined with your prior medical history, and there is no telling what your particular state could be. You can do great and perform without a glitch. On the other hand, you may experience fatigue, reduced cognitive abilities and so on. If you end up in a highly intellectual job, cognitive abilities, fatigue, nausea, depression and so on could affect your viability as a member of a highly competitive, results-driven team. Again, all of this may not be an issue in your case - you are a lot younger than me, but it is something to consider.
Long story short, go look into the maintenance links on this website and read the referenced studies. If my memory serves me well, there is material evidence in favor of maintenance.
There is one key thing in what you wrote, however. It appears that you have had stable disease for a while without maintenance. That alone may favor against rocking the boat and changing things. I believe most people are put on maintenance therapy after some induction protocol, not out of the blue.
I apologize if I cannot offer specific advice because these issues are something you and your doctor have to ultimately decide, but I wanted to flag the possible side effect issues of maintenance and the fact that it appears you are doing OK without maintenance (which is huge and many of us would be extremely happy to be in that state).
-
ivanm - Name: Ivan Mitev
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August, 2011
- Age at diagnosis: 37
Re: Should I start maintenance therapy?
Schwan,
These are very difficult questions, but I can say that I was on Revlimid for an additional 24 months after ASCT (2010), then 24 months Revlimid that was 2012. Knock on wood. I'm probably jinxing myself, since I'm awaiting my last blood test results, but I've been in remission ever since.
All the best to you!
Mike in Washington State
These are very difficult questions, but I can say that I was on Revlimid for an additional 24 months after ASCT (2010), then 24 months Revlimid that was 2012. Knock on wood. I'm probably jinxing myself, since I'm awaiting my last blood test results, but I've been in remission ever since.
All the best to you!
Mike in Washington State
-
Mike Benson
6 posts
• Page 1 of 1