I've crossed the 'should I go for transplant' bridge, deciding 'yes' on that. Three factors influenced my decision.
First, being at Stage 2 and having 52% plasma cells at diagnosis.
Second, an article I read stating that one possible advantage of transplant is needing less drugs over the course of your illness (which is possible, though possibly not probable?).
Third, just the timing and my current life circumstances. The timing seemed good for proceeding this year, in hopes of 'returning to my life' in 2016. While on induction therapy, I feel like my life is completely on hold. Cannot concentrate on anything, cannot work very much, have no energy, ongoing GI side effects, and I feel like it is impossible to make any plans.
The next decision bridge to cross is whether or not to go on 'maintenance therapy' after transplant. Of course maintenance therapy will be recommended by my doctors, and I am sure that they will explain how 'the data' supports the use of maintenance therapy. I'm finding the idea of refusing maintenance therapy to be quite attractive. I just want to give my body a break from these toxic drugs which cause so many side effects, including 'increased risk of secondary cancers'.
Of course, we are always comparing our 'toxic drugs' to our 'toxic myeloma', so I bow to my 'toxic drugs' which have worked extremely well in killing the myeloma! But at the same time, I seriously want a break from the many side-effects and the slow but ongoing damage that they cause.
I would probably try non-pharmaceutical supports like curcumin and resveratrol, though I haven't completed my research on that yet or found a good integrative medicine doctor to support me in that.
Wondering how others made their decision on whether to proceed on maintenance therapy. If you said 'no', how has that been going? If you said yes, how have you found the side-effects to be, in comparison with 'induction' therapy?
RT
Forums
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RadiantTiger - Name: Radiant Tiger
- Who do you know with myeloma?: Myself, my deceased uncle
- When were you/they diagnosed?: Feb 2015
- Age at diagnosis: 54
Re: Maintenance treatment post-transplant?
RT-
Yes, I had that decision as many of us had. I had my transplant in January 2010. At that time, the use of maintenance was just being adopted based on the recently reported benefits from the research. I had a lot of problems accepting the idea of maintenance, since one of the reasons for agreeing to the transplant was so that I could maybe take a break from drugs. At 100 days, I decided to agree to maintenance with Revlimid even though I felt that my body wasn't ready to put more toxins into it following the transplant. But, the fact that my m-spike hadn't dropped from the pre-transplant level of 0.6. g/dl led me to decide that it might be a wise idea.
Well, my gut feeling about it being too soon to add drugs again was right. Within 5 days of restarting Revlimid at 10 mg a day, I developed some pretty bad reactions to the drug. My oncologist told me to stop taking it. He said that by the time I would relapse that there would a lot more things that we could try to bring me back under control.
2 months later my m-spike dropped to 0. I didn't take any drugs other than my Zometa infusion for almost 3 years. I enjoyed the drug free period. When I relapsed and restarted treatment, I went back on Revlimid 15 mg for 21 days on, 7 days off. I had no problems with the Revlimid at this point and it brought my m-spike back down to 0.6 g/dl from over 3.5 g/dl in 3 months. I was on the 15 mg for 1 1/2 years and then had it reduced to 10 mg because my blood levels dropped quite a bit.
Last month we dropped it again to 10 mg every other day because I had developed some significant GI problems. I don't know yet if the lower dose is still controlling my myeloma. But, with the 2 dosing levels over the last 2 1/2 years, I have remained stable at 0.6 g/dl while every thing else continues to improve. I see my oncologist again in 3 weeks and we'll see how the last 6 weeks have gone with the lower dose.
All of this is to say that, as with everything else with myeloma, it is such an individual decision. I make a lot of decisions based on my gut response after I have done my research and mulled things over. When I do that, I am usually right for what is going to work for me.
Good luck with your transplant and with this latest decision. You still have plenty of time before you have to make that decision.
Nancy in Phila
Yes, I had that decision as many of us had. I had my transplant in January 2010. At that time, the use of maintenance was just being adopted based on the recently reported benefits from the research. I had a lot of problems accepting the idea of maintenance, since one of the reasons for agreeing to the transplant was so that I could maybe take a break from drugs. At 100 days, I decided to agree to maintenance with Revlimid even though I felt that my body wasn't ready to put more toxins into it following the transplant. But, the fact that my m-spike hadn't dropped from the pre-transplant level of 0.6. g/dl led me to decide that it might be a wise idea.
Well, my gut feeling about it being too soon to add drugs again was right. Within 5 days of restarting Revlimid at 10 mg a day, I developed some pretty bad reactions to the drug. My oncologist told me to stop taking it. He said that by the time I would relapse that there would a lot more things that we could try to bring me back under control.
2 months later my m-spike dropped to 0. I didn't take any drugs other than my Zometa infusion for almost 3 years. I enjoyed the drug free period. When I relapsed and restarted treatment, I went back on Revlimid 15 mg for 21 days on, 7 days off. I had no problems with the Revlimid at this point and it brought my m-spike back down to 0.6 g/dl from over 3.5 g/dl in 3 months. I was on the 15 mg for 1 1/2 years and then had it reduced to 10 mg because my blood levels dropped quite a bit.
Last month we dropped it again to 10 mg every other day because I had developed some significant GI problems. I don't know yet if the lower dose is still controlling my myeloma. But, with the 2 dosing levels over the last 2 1/2 years, I have remained stable at 0.6 g/dl while every thing else continues to improve. I see my oncologist again in 3 weeks and we'll see how the last 6 weeks have gone with the lower dose.
All of this is to say that, as with everything else with myeloma, it is such an individual decision. I make a lot of decisions based on my gut response after I have done my research and mulled things over. When I do that, I am usually right for what is going to work for me.
Good luck with your transplant and with this latest decision. You still have plenty of time before you have to make that decision.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Maintenance treatment post-transplant?
Thanks Nancy. Interesting that your m-spike was still falling 5 months post-transplant. I wonder if that's unusual.
Glad to hear you were able to get back into a remission from maintenance. I guess as the years progress, some level of side effects from treatment is inevitable. Hope yours are manageable.
RT
Glad to hear you were able to get back into a remission from maintenance. I guess as the years progress, some level of side effects from treatment is inevitable. Hope yours are manageable.
RT
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RadiantTiger - Name: Radiant Tiger
- Who do you know with myeloma?: Myself, my deceased uncle
- When were you/they diagnosed?: Feb 2015
- Age at diagnosis: 54
Re: Maintenance treatment post-transplant?
Hi Radiant Tiger,
You've been struggling with probably the two toughest decisions in first-line multiple myeloma treatment these days - whether to do an upfront SCT, and whether to do maintenance therapy. As you know, there are pros and cons on both sides of these decisions. I hope you feel good having made the SCT decision, and I hope it goes well for you. Often we feel better mentally after having made a difficult decision and then following that path, wherever it takes us.
My decision on both of these questions was maybe a little easier than for many people. I decided to participate in a clinical trial, and I just followed the protocol of the trial. In my case, that has meant both the SCT and the maintenance therapy with Revlimid. The protocol also called for a short consolidation phase between the SCT and maintenance phases, where I had 2 cycles of RVD.
Like Nancy, my m-spike was the same at Day +90 as it was before the SCT. In my case, it was 0.4 g/dl. It dropped slightly to 0.2 g.dl at the end of the consolidation phase and then, by around 6 months into the maintenance phase, it had dropped to 0. I'm still in the maintenance phase, with about 4 more months to go before it stops at the end of 2 years. My m-spike is still 0.
In answer to your question about side effects, I have definitely had fewer, less severe side effects during maintenance than during induction and consolidation. Life is pretty much back to normal for me. The Revlimid has lowered my WBC and platelets, but we've dealt with that by lowering my dose from 15 mg daily to 10 mg. I have off and on diarrhea, probably more on than off. But it is not a huge problem. I also still have somewhat less energy than in the old days before starting any treatment, but that's not so bad either. A short nap in the afternoon gets me back on track.
Best wishes to you for a smooth and successful SCT. And good luck with your maintenance therapy decision.
Mike
You've been struggling with probably the two toughest decisions in first-line multiple myeloma treatment these days - whether to do an upfront SCT, and whether to do maintenance therapy. As you know, there are pros and cons on both sides of these decisions. I hope you feel good having made the SCT decision, and I hope it goes well for you. Often we feel better mentally after having made a difficult decision and then following that path, wherever it takes us.
My decision on both of these questions was maybe a little easier than for many people. I decided to participate in a clinical trial, and I just followed the protocol of the trial. In my case, that has meant both the SCT and the maintenance therapy with Revlimid. The protocol also called for a short consolidation phase between the SCT and maintenance phases, where I had 2 cycles of RVD.
Like Nancy, my m-spike was the same at Day +90 as it was before the SCT. In my case, it was 0.4 g/dl. It dropped slightly to 0.2 g.dl at the end of the consolidation phase and then, by around 6 months into the maintenance phase, it had dropped to 0. I'm still in the maintenance phase, with about 4 more months to go before it stops at the end of 2 years. My m-spike is still 0.
In answer to your question about side effects, I have definitely had fewer, less severe side effects during maintenance than during induction and consolidation. Life is pretty much back to normal for me. The Revlimid has lowered my WBC and platelets, but we've dealt with that by lowering my dose from 15 mg daily to 10 mg. I have off and on diarrhea, probably more on than off. But it is not a huge problem. I also still have somewhat less energy than in the old days before starting any treatment, but that's not so bad either. A short nap in the afternoon gets me back on track.
Best wishes to you for a smooth and successful SCT. And good luck with your maintenance therapy decision.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Maintenance treatment post-transplant?
Hi mikeb,
In four months,when your maintenance phase is over, do you plan to continue taking Revlimid, if your numbers remain good?
Thanks,
Coach Hoke
In four months,when your maintenance phase is over, do you plan to continue taking Revlimid, if your numbers remain good?
Thanks,
Coach Hoke
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Maintenance treatment post-transplant?
Hi RT,
As was pointed out above, you need to see what response is after the transplant before making your decision. Another potential path to pursue is to treat with full strength therapy after the auto for a couple of cycles and than stop if you achieve your desired level of response.
One thing I have mentioned in the forum before is that it seems that every long term survivor (10 to 20 year plus) I have read about all seem to have taken therapy breaks. I had mentioned this in this thread previously.
"Long-term multiple myeloma survivors - case studies" (started April 27, 2015)
Your first remission may be the only time you will get a therapy break. Dr. Rajkumar mentioned this in a paper he wrote and it was discussed in another thread.
(See this thread for further discussion of Dr. Rajkumar's article.)
Best of luck with your decision.
Mark
As was pointed out above, you need to see what response is after the transplant before making your decision. Another potential path to pursue is to treat with full strength therapy after the auto for a couple of cycles and than stop if you achieve your desired level of response.
One thing I have mentioned in the forum before is that it seems that every long term survivor (10 to 20 year plus) I have read about all seem to have taken therapy breaks. I had mentioned this in this thread previously.
"Long-term multiple myeloma survivors - case studies" (started April 27, 2015)
Your first remission may be the only time you will get a therapy break. Dr. Rajkumar mentioned this in a paper he wrote and it was discussed in another thread.
"In fact, indefinite maintenance until disease progression virtually ensures continuous lifelong drug therapy for myeloma patients, at a time when median survival for younger standard-risk patients is approaching > 10 years. A clear overall survival benefit will still justify this approach, particularly if therapy is reasonably well tolerated. Chronic myelogenous leukemia is a good example in this situation. However, we simply do not have data that survival is convincingly prolonged, at least as of now. Even in the U.S. study that found a survival benefit, we know that not all subgroups derived an improvement in survival. And we do know that some patients can be harmed."
(See this thread for further discussion of Dr. Rajkumar's article.)
Best of luck with your decision.
Mark
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Mark11
Re: Maintenance treatment post-transplant?
My husband has IgA, ISS stage 2 myeloma with one abnormality; t(4;14). He has no bone involvement and is in otherwise excellent health. He was in complete remission going into his autologous stem cell transplant (ASCT) on May 6, 2015. We were told at diagnosis by his myeloma specialist that he would never be off of chemo (although he is off chemo right now as he recovers from the SCT; he feels so great the recovery restrictions are hard!) Aggressive disease = aggressive treatment. It's not just about reaching CR; it's getting the CR to stick. He has an appointment in one month to discuss maintenance therapy.
Mayo mSmart says Velcade maintenance for t(4;14). We have a friend with the same cytogenetics (chromosomal abnormalities) who is doing well on Revlimid-only maintenance for 4 years now, treated at the same world class center as my husband, the same way. Yet, we were told last month by the NP that "whatever got you to this place, will be your maintenance" [lower doses]; that would be Revlimid, Velcade, and dex (RVD). They don't really know, do they? Not enough randomized studies with your particular version of multiple myeloma, if any at all.
Difficult decisions and uncertainty are just part of having this disease. It's bad enough you have this deadly cancer, now you and your doctors have to guess at what might work best. If my husband were standard risk and in CR, he would take a "chemo holiday". If your numbers start to go up, you just go back into treatment. Because his disease is more aggressive, his myeloma has a good chance of coming back early and possibly out of control.
That said, everyone is different, and no one really knows the nature of your disease. Read everything you can and listen to your doctors and fellow patients. What else can you do?
Mayo mSmart says Velcade maintenance for t(4;14). We have a friend with the same cytogenetics (chromosomal abnormalities) who is doing well on Revlimid-only maintenance for 4 years now, treated at the same world class center as my husband, the same way. Yet, we were told last month by the NP that "whatever got you to this place, will be your maintenance" [lower doses]; that would be Revlimid, Velcade, and dex (RVD). They don't really know, do they? Not enough randomized studies with your particular version of multiple myeloma, if any at all.
Difficult decisions and uncertainty are just part of having this disease. It's bad enough you have this deadly cancer, now you and your doctors have to guess at what might work best. If my husband were standard risk and in CR, he would take a "chemo holiday". If your numbers start to go up, you just go back into treatment. Because his disease is more aggressive, his myeloma has a good chance of coming back early and possibly out of control.
That said, everyone is different, and no one really knows the nature of your disease. Read everything you can and listen to your doctors and fellow patients. What else can you do?
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KLR - Name: KLR
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 58
Re: Maintenance treatment post-transplant?
Greetings:
I was diagnosed in July, 2013. Had Revlimid 25 mg / dex 40 mg induction in the fall of 2013, then an autologous stem cell transplant (ASCT) at Mayo (MN) in February, 2014. Superb care there, BTW, but a bit cold (-:
Did 4 months of consolidation (Revlimid 25 mg / dex 40 mg) after Mayo. Had little in the way of challenges or QOL issue through any of this. Went on maintenance Revlimid (10 mg) in the summer of 2014. Sill on Revlimid maintenance (10 mg). (I am standard risk FISH, FYI) Maintaining very good QOL, thankfully.
At my annual consult at Mayo (MN) two weeks ago, the doc said she is now less concerned about secondary malignancy, due to newer science, than she was when I had my 100 day a year ago. Nonetheless, she plans to give me a Revlimid break a year or 18 months or so from now, and see how things go.
Regarding dropping M-spike after transplant - Here are my numbers. Overall the pattern is a good one. (We IgA folks typically pay more attention to IgA than M-spike, as IgA is a more reliable marker of disease for us.)
M-Spike IgA
Jul 03 2013 1858
Aug 06 2013 1.5 1960
Sep 01 2013 1053
Oct 03 2013 552
Nov 07 2013 0.2 464
Dec 05 2013 444
Jan 07 2014 0.6 804
TRANSPLANT
Mar 02 2014 0.3 324
Mar 19 2014 0.3 520
Apr 16 2014 0.3 498
Jun 02 2014 0.4 538
Jun 11 2014 0.2 432
Jul 09 2014 0.1 264
Aug 06 2014 254
Sep 13 2014 0.1 303
Nov 12 2014 0.1 284
Sep 13 2014 0.1 303
Nov 12 2014 0.1 284
Jan 19 2015 0.1 218
Mar 23 2015 0.1 208
My best to you as you consider these complex options...
On a personal note, my retirement is August 16, and we have lots of international travel planned!! So there is hope for a good QOL after ASCT, with or without maintenance. I am very pleased with my progress so far.
Wesley
I was diagnosed in July, 2013. Had Revlimid 25 mg / dex 40 mg induction in the fall of 2013, then an autologous stem cell transplant (ASCT) at Mayo (MN) in February, 2014. Superb care there, BTW, but a bit cold (-:
Did 4 months of consolidation (Revlimid 25 mg / dex 40 mg) after Mayo. Had little in the way of challenges or QOL issue through any of this. Went on maintenance Revlimid (10 mg) in the summer of 2014. Sill on Revlimid maintenance (10 mg). (I am standard risk FISH, FYI) Maintaining very good QOL, thankfully.
At my annual consult at Mayo (MN) two weeks ago, the doc said she is now less concerned about secondary malignancy, due to newer science, than she was when I had my 100 day a year ago. Nonetheless, she plans to give me a Revlimid break a year or 18 months or so from now, and see how things go.
Regarding dropping M-spike after transplant - Here are my numbers. Overall the pattern is a good one. (We IgA folks typically pay more attention to IgA than M-spike, as IgA is a more reliable marker of disease for us.)
M-Spike IgA
Jul 03 2013 1858
Aug 06 2013 1.5 1960
Sep 01 2013 1053
Oct 03 2013 552
Nov 07 2013 0.2 464
Dec 05 2013 444
Jan 07 2014 0.6 804
TRANSPLANT
Mar 02 2014 0.3 324
Mar 19 2014 0.3 520
Apr 16 2014 0.3 498
Jun 02 2014 0.4 538
Jun 11 2014 0.2 432
Jul 09 2014 0.1 264
Aug 06 2014 254
Sep 13 2014 0.1 303
Nov 12 2014 0.1 284
Sep 13 2014 0.1 303
Nov 12 2014 0.1 284
Jan 19 2015 0.1 218
Mar 23 2015 0.1 208
My best to you as you consider these complex options...
On a personal note, my retirement is August 16, and we have lots of international travel planned!! So there is hope for a good QOL after ASCT, with or without maintenance. I am very pleased with my progress so far.
Wesley
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wesley - Who do you know with myeloma?: me
- When were you/they diagnosed?: July, 2013
- Age at diagnosis: 60
Re: Maintenance treatment post-transplant?
Hi coachhoke,
Great question about whether I will continue Revlimid maintenance after the clinical trial protocol maintenance period is up in four months. Short answer is I don't know.
Whether to continue or not is something I've been thinking about recently, but I have not talked about it yet with my myeloma specialist. I have another BMB coming up in July, I think. So I want to get the results from that first, and then have the conversation about post-trial options.
Hi Wesley,
Thanks a lot for your post and for giving us information about your treatment. It's great to hear that you've been doing so well. Keep up the good work!
And congratulations on your upcoming retirement! Best wishes for a long and happy retirement filled with lots of travel.
Mike
Great question about whether I will continue Revlimid maintenance after the clinical trial protocol maintenance period is up in four months. Short answer is I don't know.
Whether to continue or not is something I've been thinking about recently, but I have not talked about it yet with my myeloma specialist. I have another BMB coming up in July, I think. So I want to get the results from that first, and then have the conversation about post-trial options.
Hi Wesley,
Thanks a lot for your post and for giving us information about your treatment. It's great to hear that you've been doing so well. Keep up the good work!
And congratulations on your upcoming retirement! Best wishes for a long and happy retirement filled with lots of travel.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Maintenance treatment post-transplant?
RT,
I had an ASCT in June 2014. In fact, 1 year ago from today I was on Day 11 of a 16-day stay in the hospital for the transplant. My doctor does not start maintenance therapy until 6 months after the ASCT as he wants the high-dose of chemo drugs to clear the body before starting the mainatenance regimen.
I had an allergic reaction (rash on my back) when I initially started maintenance therapy in January with 15 mg of Revlimid. To make a long story short, I am now on 10 mg a day (Revlimid only, no dex) and have had very few side effects - mild neuropathy, diahrrea, and some fatigue.
Life is pretty much back to normal for me and I feel as good as I have felt since being diagnosed just over 3 years ago.
I hope your ASCT goes well - good luck!
I had an ASCT in June 2014. In fact, 1 year ago from today I was on Day 11 of a 16-day stay in the hospital for the transplant. My doctor does not start maintenance therapy until 6 months after the ASCT as he wants the high-dose of chemo drugs to clear the body before starting the mainatenance regimen.
I had an allergic reaction (rash on my back) when I initially started maintenance therapy in January with 15 mg of Revlimid. To make a long story short, I am now on 10 mg a day (Revlimid only, no dex) and have had very few side effects - mild neuropathy, diahrrea, and some fatigue.
Life is pretty much back to normal for me and I feel as good as I have felt since being diagnosed just over 3 years ago.
I hope your ASCT goes well - good luck!
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Steve Mohr - Name: Steve Mohr
- Who do you know with myeloma?: No one
- When were you/they diagnosed?: April 20 12
- Age at diagnosis: 56
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