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maintenance therapy or no maintenance therapy?
I just reached 100 days post auto stem cell transplant and had my bone marrow biopsy done. The results showed complete remission and my light chains were in normal range. I found out I had multiple myeloma less than a year ago, went through the multiple rounds of induction therapy with velcade-revlimid-dex and then had cytoxan, a stem cell harvest, and melphalen and a stem cell transplant. All therapies worked great and quickly. My doc wants to meet with me to discuss maintenance therapy with Revlimid. I am inclined to say no because from what I've read it only prolongs progression free survival and not necessarily overall survival. I feel that given how well it worked for me to start with, I'd like to keep that option open when and if the myeloma returns instead of potentially having the Revlimid no longer work for me when I really need it to. I realize I am risking the myeloma returning quicker but I am willing to take that chance to have a drug-free quality of life during the period of remission. Am I wrong in thinking like this? Does anyone have other information that might be helpful in my making this decision? Doctors, what do you say?
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mowgli18 - Name: Mowgli18
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March 2011
- Age at diagnosis: 51
Re: maintenance therapy or no maintenance therapy?
I'm about at 130 days post SCT, in CR and had a pre-SCT treatment of four cycles of RVD. I swallowed my second cap of 10mg Revlimid this morning, so I am very early into maintenance therapy.
You pose a good question.
I don't have an answer for you, but I'll tell what went into my decision process to go with maintenance therapy. One thing about this decision; it is a process and it can always be revised.
I'll tell you which reasons I think are rational and which ones are emotional.
My rationale is posted in the order I think is important.
First: My physicians recommended it. I think this is a big one. I know they don't know everything but my doctors know the science and they know me. That's a powerfully rational combination.
Second: I am taking only 10 mg without Velcade and Dex to which I attribute most of the side effects I experienced previously. If the side effects really impede on my life, I can always rationally revisit the decision to use Revlimid.
Third, I feel better fighting multiple myeloma actively. This is an emotional reason, but the emotional is important in the fight.
Fourth: I'm betting that by extending the time I am in remission allows more research, more effective treatments and new drugs. Gambling is both rational and emotional.
Now, I'm not 100% sure about my decision either and I have my own questions, that I will put in another thread, but I would like anybody's feedback. We are all plodding into the fog and I'd like to hear other voices that are out there.
You pose a good question.
I don't have an answer for you, but I'll tell what went into my decision process to go with maintenance therapy. One thing about this decision; it is a process and it can always be revised.
I'll tell you which reasons I think are rational and which ones are emotional.
My rationale is posted in the order I think is important.
First: My physicians recommended it. I think this is a big one. I know they don't know everything but my doctors know the science and they know me. That's a powerfully rational combination.
Second: I am taking only 10 mg without Velcade and Dex to which I attribute most of the side effects I experienced previously. If the side effects really impede on my life, I can always rationally revisit the decision to use Revlimid.
Third, I feel better fighting multiple myeloma actively. This is an emotional reason, but the emotional is important in the fight.
Fourth: I'm betting that by extending the time I am in remission allows more research, more effective treatments and new drugs. Gambling is both rational and emotional.
Now, I'm not 100% sure about my decision either and I have my own questions, that I will put in another thread, but I would like anybody's feedback. We are all plodding into the fog and I'd like to hear other voices that are out there.
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Chip - Name: Chip
- When were you/they diagnosed?: 20 November 2010
- Age at diagnosis: 58
Re: maintenance therapy or no maintenance therapy?
Me Too...for the same reasons as Chip stated, I did a year of maintenance chemo starting 100 days after the SCT. I started out on 10 mg. of Revlimid, and took that dosage for about 7 months. Due to a low neutrophil count, the next 5 months were on a 5 mg. dose, which is the lowest available (I was in a CR already, so my oncologist thought that was OK). I had some PN but for the most part it has cleared up now...just some tingling in my feet to remind me of what I went through. I ended that maintenance year in April '10 and in still in a CR...so far, so good. I am able to exercise an hour every day and try to eat a good healthy diet, and get lots of rest....the best I can do to stay healthy. My wonderful family and friends keep me going too!!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: maintenance therapy or no maintenance therapy?
Dear Mowgli18,
This is a great question. You are right, the data with lenalidomide maintenance up to this point are most impressive with respect to progression-free survival. However, when the US maintenance trial results were presented at the International Myeloma Workshop in Paris in the Spring of 2011, an overall survival advantage appeared to be emerging. Longer follow-up of this study and the French study will be critical to help inform decision making moving forward. Certainly, if a clinically significant survival advantage emerges with the use of lenalidomide maintenance therapy in these studies, under those circumstances lenalidomide maintenance would become the clear standard of care after autologous stem cell transplantation.
For now, I think it is prudent to make this decision on a case-by-case basis. Here are some of the factors that I would consider in making the decision: 1) did the patient have intermediate or high risk disease at diagnosis; 2) how did the patient tolerate therapy; 3) what were the morbidities (complications) of myeloma at diagnosis and how severe were they; 4) what are the patient's goals of therapy -- what is important for that particular patient; and 5) what level of response does the patient have post-transplant. For patients with low risk disease and little in the way of morbidity related to myeloma at diagnosis who are in a complete remission post-transplant, I would have the maintenance talk with the patient, but I would support a no decision if the patient so chooses. For patients who have intermediate to high risk disease and/or significant morbidity at initial diagnosis of myeloma (for example, extensive painful bone lesions, kidney failure) and/or significant residual disease post-transplant, I think the use of maintenance lenalidomide makes good sense, In fact, in the highest risk myelomas, lenalidomide maintenance alone is probably not sufficient, although there is data emerging suggesting that bortezomib maintenance may improve survival in those with the 17p deletion on cytogenetic/FISH testing.
If you ask 10 different myeloma physicians this question (or 10 patients for that matter), you will get many different answers! But, I hope this provides you with a framework to help you make your decision.
Best of luck and let us know what you decide. Take care!
Pete V.
This is a great question. You are right, the data with lenalidomide maintenance up to this point are most impressive with respect to progression-free survival. However, when the US maintenance trial results were presented at the International Myeloma Workshop in Paris in the Spring of 2011, an overall survival advantage appeared to be emerging. Longer follow-up of this study and the French study will be critical to help inform decision making moving forward. Certainly, if a clinically significant survival advantage emerges with the use of lenalidomide maintenance therapy in these studies, under those circumstances lenalidomide maintenance would become the clear standard of care after autologous stem cell transplantation.
For now, I think it is prudent to make this decision on a case-by-case basis. Here are some of the factors that I would consider in making the decision: 1) did the patient have intermediate or high risk disease at diagnosis; 2) how did the patient tolerate therapy; 3) what were the morbidities (complications) of myeloma at diagnosis and how severe were they; 4) what are the patient's goals of therapy -- what is important for that particular patient; and 5) what level of response does the patient have post-transplant. For patients with low risk disease and little in the way of morbidity related to myeloma at diagnosis who are in a complete remission post-transplant, I would have the maintenance talk with the patient, but I would support a no decision if the patient so chooses. For patients who have intermediate to high risk disease and/or significant morbidity at initial diagnosis of myeloma (for example, extensive painful bone lesions, kidney failure) and/or significant residual disease post-transplant, I think the use of maintenance lenalidomide makes good sense, In fact, in the highest risk myelomas, lenalidomide maintenance alone is probably not sufficient, although there is data emerging suggesting that bortezomib maintenance may improve survival in those with the 17p deletion on cytogenetic/FISH testing.
If you ask 10 different myeloma physicians this question (or 10 patients for that matter), you will get many different answers! But, I hope this provides you with a framework to help you make your decision.
Best of luck and let us know what you decide. Take care!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: maintenance therapy or no maintenance therapy?
I have decided to go without maintenance therapy for the time being. My myeloma can be tracked with the lambda free light chain blood testing which is what we are going to do every 3 months. If the lambda free light chains start to increase I will reconsider but for the time being I can remain drug free. I realize I am risking an earlier relapse but I have responded so well to both the initial chemo (my original free light chains were almost 1200 and they went down to 2.96 after only 3 cycles of chemo) and my stem cell transplant that I'd like a little time off from constant doctors visits and hope that if it does come back the treatment will be as effective.
Thanks for everyone's comments and help.
Thanks for everyone's comments and help.
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mowgli18 - Name: Mowgli18
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March 2011
- Age at diagnosis: 51
Re: maintenance therapy or no maintenance therapy?
Great questions and great answers.
I too am 130 days post SCT. Since I wasn't very close to CR after 60 days post SCT, I went on maintenance Rev at that time. (vs consolidation therapy)
I have no side effects from low dose Revlimid so it made my decision easy.
Question. Pre SCT, my mspike was 1.0. at day 100 post SCT it was 0.35. At day 125 it was 0.22. Is it possible I'll just slowly drift into CR??
I too am 130 days post SCT. Since I wasn't very close to CR after 60 days post SCT, I went on maintenance Rev at that time. (vs consolidation therapy)
I have no side effects from low dose Revlimid so it made my decision easy.
Question. Pre SCT, my mspike was 1.0. at day 100 post SCT it was 0.35. At day 125 it was 0.22. Is it possible I'll just slowly drift into CR??
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Stann
Re: maintenance therapy or no maintenance therapy?
I decided not to take the thalidomide maintenence that was offered at the time following my transplant (2 years ago) because we were considering kids in the futrue (I'm still young), and since I responded to well to all the treatments so far if with a very good response. I am on Pamidronate though, but almost done the two years so I can stop the infusions soon! I have no regrets I'm happy to enjoy this break from heavy duty meds.
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guest
Re: maintenance therapy or no maintenance therapy?
I just stopped mine, i have moved on to the Budwig protocal, I am sure i will here about it in march from my doctors. I am still going to pay for the Revlimid in Feb. But i am curious to see my levels. I am in remmission as well 8 months out.
Since starting some of the budwig i feel great. I am running 5-7 miles a day I work my job. i really never stopped any of it even going through it all. I feel more worried what the doctors will say. I want them to monitor me for the next 6 months and see what happens.
Since starting some of the budwig i feel great. I am running 5-7 miles a day I work my job. i really never stopped any of it even going through it all. I feel more worried what the doctors will say. I want them to monitor me for the next 6 months and see what happens.
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greg matthews - Name: Greg Matthews
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 12-28-2010
- Age at diagnosis: 48
Re: maintenance therapy or no maintenance therapy?
Stan-
My m-spike didn't reach 0 until about 6 months post transplant. My other blood level values took a few more months to reach the normal range. I started Revlimid 10 mg 100 days after my transplant, but developed a bad reaction to it. I've been treatment free other than Zometa every 6 weeks for 2 years. My m-spike has started to gradually creep up, but is still under 1.0.
Good luck. Give yourself time to respond. Not everyone responds quickly to the transplant. I'm glad that I did the transplant and happy not to be on any chemo.
Nancy
My m-spike didn't reach 0 until about 6 months post transplant. My other blood level values took a few more months to reach the normal range. I started Revlimid 10 mg 100 days after my transplant, but developed a bad reaction to it. I've been treatment free other than Zometa every 6 weeks for 2 years. My m-spike has started to gradually creep up, but is still under 1.0.
Good luck. Give yourself time to respond. Not everyone responds quickly to the transplant. I'm glad that I did the transplant and happy not to be on any chemo.
Nancy
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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 therapy or no maintenance therapy?
My m-spike was .3 going into transplant and .2 around day 30. I want to be aggressive with my treatment and we tried 5mg of Rev. app. day 40. I took it for 2 wks. and platelets and WBC dropped so I quit taking it. Day 100 is around the middle of Feb. and will have a bmb and see where we go from there.
Ritz
Ritz
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Ritz - Name: Ritz
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Oct 2010
- Age at diagnosis: 62
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