RT,
Like others above, I feel it makes sense not to make a decision about maintenance therapy up front now but wait till after the SCT to see how the outcome goes. But is it not too early to do the research on it as you are doing now.
I doubt maintenance therapy would start immediately after the SCT in any case. I have not heard anyone saying that was the case for them, and it was not for me. The UAMS Total Therapy program for myeloma may start on drug protocol immediately after SCT. They do back-to-back (tandem) SCT with lots of drug therapy; maybe some readers on that protocol can comment more on that. But it does not sound like you are on a Total Therapy type protocol.
To me, it makes sense to let the body recover a bit from the SCT before hitting it immediately with more drugs and, like others have said, it can take some time before things stabilize after SCT to see how successful it was or not. Starting maintenance therapy immediately after SCT can mask or forever hide how well the SCT went.
Induction therapy was very hard for me too and, like you, I was really looking forward to the day when it and the SCT would be over and I could start some recovery and getting a bit of my old life back. And that is exactly what happened. I went on Revlimid maintenance therapy and, while it did affect me some, it was nothing like induction therapy, and I could largely do everything I could do before. And, in the case of my bike riding, I was more fit than I had ever been in that first year after my SCT. I also believe I tolerated Revlimid better than most people; others have had a more difficult time with it.
Whatever you chose to do, I hope it works out for you and get you feeling yourself again at least for a while.
Best wishes,
Eric
Forums
Re: Maintenance treatment post-transplant?
I was diagnosed with multiple myeloma in 2008 and underwent 4 cycles of CyBorD (cyclophosphamide, Velcade, dexamethasone) as part of a clinical trial at Mayo in AZ. I also was found to carry a t(14;16). My myeloma type was strictly lambda light chain without any Ig involvement.
I achieved what my myeloma specialist called a complete biochemical remission, very quickly, so had 0 M-spike going into ASCT in February 2009. It had been decided that, because of my high risk cytogenetics, I would go on maintenance (Revlimid) in July, after my 100 days were over. My dosage was between 10-15 mg, depending on how I was tolerating it. Typically GI upsets (diarrhea) and fatigue.
After 3 years on Revlimid maintenance, my myeloma doc and I mutually decided it was time to stop, as this was about the time of concern for a secondary cancer in Revlimid users and I had been experiencing several bronchial infections close together. I have to admit I was not certain I really wanted to stop the Revlimid, as I had continued to be in complete remission.
I had a BMB in 2012 and was found to have zero minimal residual disease. So I have been on a chemo vacation for the past 3 years.
As of July 1st, it will be 7 years since my diagnosis, and am still in complete biochemical remission – much to the surprise of my myeloma specialist in light of my high risk disease. I hope to continue surprising him! Maintenance certainly worked for me, but choosing whether or not to do it depends on the patient's own circumstances.
I achieved what my myeloma specialist called a complete biochemical remission, very quickly, so had 0 M-spike going into ASCT in February 2009. It had been decided that, because of my high risk cytogenetics, I would go on maintenance (Revlimid) in July, after my 100 days were over. My dosage was between 10-15 mg, depending on how I was tolerating it. Typically GI upsets (diarrhea) and fatigue.
After 3 years on Revlimid maintenance, my myeloma doc and I mutually decided it was time to stop, as this was about the time of concern for a secondary cancer in Revlimid users and I had been experiencing several bronchial infections close together. I have to admit I was not certain I really wanted to stop the Revlimid, as I had continued to be in complete remission.
I had a BMB in 2012 and was found to have zero minimal residual disease. So I have been on a chemo vacation for the past 3 years.
As of July 1st, it will be 7 years since my diagnosis, and am still in complete biochemical remission – much to the surprise of my myeloma specialist in light of my high risk disease. I hope to continue surprising him! Maintenance certainly worked for me, but choosing whether or not to do it depends on the patient's own circumstances.
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DnaDoc
Re: Maintenance treatment post-transplant?
I have the high risk myeloma with the deletion (17p) abnormality. I completed 4 cycles of RVD, then went to Mayo (Rochester) in Feb 2015 for an ASCT. I was just back at Mayo a couple weeks ago to have a bone marrow biopsy and to complete my 100-day checkup with the myeloma specialist. Maintenance chemo was strongly suggested by my Mayo doctor because of the del(17p) factor. Because of the aggressive nature of that abnormality, starting a maintenance plan was always in the plan for me from my original diagnosis last fall when the del(17p) was discovered using FISH testing.
Both the Mayo specialist and my local oncologist suggested and agreed upon the fact that maintenance chemo was the best plan for me.
I begin maintenance chemo today and will be getting Velcade injections every other week and Zometa once a month. As of now, no dex will be given, but may be added later if the doctor thinks it's needed. Currently the plan is to be on Velcade for up to 2 years -- if my numbers stay down. According to my Mayo doctor, I have reached a complete response, so hopefully I can stay in that category for a long, long time.
Best of luck in deciding what to do about maintenance. Each of us are so different in our myeloma journey, but yet we are all on the same cruise ship together.
Both the Mayo specialist and my local oncologist suggested and agreed upon the fact that maintenance chemo was the best plan for me.
I begin maintenance chemo today and will be getting Velcade injections every other week and Zometa once a month. As of now, no dex will be given, but may be added later if the doctor thinks it's needed. Currently the plan is to be on Velcade for up to 2 years -- if my numbers stay down. According to my Mayo doctor, I have reached a complete response, so hopefully I can stay in that category for a long, long time.
Best of luck in deciding what to do about maintenance. Each of us are so different in our myeloma journey, but yet we are all on the same cruise ship together.
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CabinGirl - Who do you know with myeloma?: Self
- When were you/they diagnosed?: Sept. 2014
- Age at diagnosis: 57
Re: Maintenance treatment post-transplant?
I had a six-month break after SCT before my doctor recommended maintenance chemo because of the research showing the median time to disease progression being twice as long with it. I started with Revlimid, but was switched to Velcade after six months because my white counts dropped too much with Revlimid.
Compared to both my induction chemo (CyBorD) and SCT, maintenance chemo has had almost no side effects. My M-spike was substantially lowered with my first induction round and even more after the SCT, but only became undetectable after 3 months of maintenance chemo. I am now 2 1/2 years post SCT and still have an undetectable M-protein.
Compared to both my induction chemo (CyBorD) and SCT, maintenance chemo has had almost no side effects. My M-spike was substantially lowered with my first induction round and even more after the SCT, but only became undetectable after 3 months of maintenance chemo. I am now 2 1/2 years post SCT and still have an undetectable M-protein.
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Ginny - Name: Ginny
- Who do you know with myeloma?: self and four friends
- When were you/they diagnosed?: October, 2012
- Age at diagnosis: 62
Re: Maintenance treatment post-transplant?
I had tandem SCT in 2012, 3 months apart. I am kappa light chain myeloma. I had complete remission after STC and the doctors recommended I not do any maintenance therapy because of my excellent results.
This year I had a relapse and started Revlimid 25 mg 21 days and dex 40 once a week. I find that maintenance was easier then my original chemo, which had Velcade twice a week also. I am able to do most things at this point. Some days I am tired but I travel, shop, and work in my flower garden as I can.
I did retire when I had my STC but I had worked for my county for 36 years so I was eligible for retirement. And there are times when I have chemo brain that I am thankful for not having to remember all those state and local laws. Lol. But by being retired I am able to enjoy my life.
Like the others, I think you need to wait until after your STC to make a decision. My STC did reset my chromosome that was off so I got a new start there.
Best of luck to you.
This year I had a relapse and started Revlimid 25 mg 21 days and dex 40 once a week. I find that maintenance was easier then my original chemo, which had Velcade twice a week also. I am able to do most things at this point. Some days I am tired but I travel, shop, and work in my flower garden as I can.
I did retire when I had my STC but I had worked for my county for 36 years so I was eligible for retirement. And there are times when I have chemo brain that I am thankful for not having to remember all those state and local laws. Lol. But by being retired I am able to enjoy my life.
Like the others, I think you need to wait until after your STC to make a decision. My STC did reset my chromosome that was off so I got a new start there.
Best of luck to you.
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Music box lady - Name: Margie
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 60
Re: Maintenance treatment post-transplant?
I am kappa light chain myeloma and had SCT in Jan 2012. I did not do maintenance therapy. We did wait and watch. My numbers held steady in range for 3 years. The kappa light chains started to move out of range in February of this year. At my July appointment we will take the next step. In the mean time, I've had 3 years of no treatment and thankful for every minute of it. Each myeloma patient is unique, what treatment works for one does not work for another. I agree with the others. Gather your information and you will make the right decision at the right time.
Good luck with your transplant . JoAnn B
Good luck with your transplant . JoAnn B
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JoAnn B
Re: Maintenance treatment post-transplant?
Just a follow up to my post earlier this week in this thread.
I did end up having "the discussion" with my oncologist when I saw him Wednesday. He recommended that I continue on Revlimid maintenance at the same dosage (10 mg) when I finish the clinical trial maintenance phase in a few months "until kingdom comes" (his words, which I got a little chuckle out of).
He thinks it's best to continue what we've been doing since the treatment has worked so well for me. And, of course, it's interesting to read about other doctors who say to stop a treatment that has gotten a patient to CR, sCR, or MRD- in order to give the patient a treatment break and better QOL. To me this seems like different doctors charting opposite courses based on the same data. Certainly, there is no single right answer right now.
We discussed pros and cons. He is strongly influenced by a British trial showing improved OS for patients on long-term Revlimid maintenance.
I have not made up my mind. I still have awhile to think about it ...
Mike
I did end up having "the discussion" with my oncologist when I saw him Wednesday. He recommended that I continue on Revlimid maintenance at the same dosage (10 mg) when I finish the clinical trial maintenance phase in a few months "until kingdom comes" (his words, which I got a little chuckle out of).
He thinks it's best to continue what we've been doing since the treatment has worked so well for me. And, of course, it's interesting to read about other doctors who say to stop a treatment that has gotten a patient to CR, sCR, or MRD- in order to give the patient a treatment break and better QOL. To me this seems like different doctors charting opposite courses based on the same data. Certainly, there is no single right answer right now.
We discussed pros and cons. He is strongly influenced by a British trial showing improved OS for patients on long-term Revlimid maintenance.
I have not made up my mind. I still have awhile to think about it ...
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?
Mike, I will be interested in how you resolve this. So far my doctor is in the two-years-of-maintenance camp, but the trend seems to be in favor of continuous maintenance treatment until progression. I am still about nine months away from a decision, but it is on my mind.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Maintenance treatment post-transplant?
Mikeb,
Thanks for the update. I chose to stop maintenance after two years (it's been 6 months now).
My numbers haven't changed at all, but every month I wonder if I did the right thing. I feel pretty good on the drug holiday, but I never did feel that bad. QOL issues weren't my main concern; it just seems that, when the numbers return, I can start back on the Revlimid (or add dex and Kyprolis).
Coach Hoke
Thanks for the update. I chose to stop maintenance after two years (it's been 6 months now).
My numbers haven't changed at all, but every month I wonder if I did the right thing. I feel pretty good on the drug holiday, but I never did feel that bad. QOL issues weren't my main concern; it just seems that, when the numbers return, I can start back on the Revlimid (or add dex and Kyprolis).
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?
A couple of interesting study results regarding maintenance post ACT. The first one was funded by Celgene but significant nonetheless. The second was presented at ASCO recently. I didn't see these in this thread.
http://www.ncbi.nlm.nih.gov/pubmed/25184862
http://www.newswise.com/articles/view/635042/
Both seem to favorably show Revlimid maintenance benefit.
Best! BN
http://www.ncbi.nlm.nih.gov/pubmed/25184862
http://www.newswise.com/articles/view/635042/
Both seem to favorably show Revlimid maintenance benefit.
Best! BN
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
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