Hello!
Today I "salubrate" the fact that it´s three months since my high dose chemo and auto stem cell transplant took place. After four induction cycles of VCD where my M-spike dropped from 27 g/l to 0 g/l after two induction cycles, it was good to find out that my M-spike still is nowhere to be found after the transplant. I´m still waiting for the results of the free light chain assay, bone marrow biopsy and I´m scheduled for x-rays and CT in a couple of days.
I´ve been able to go back to work since three weeks and everything work out fine. I try to be physically active 4-5 days/week. I mostly go out biking for a couple of hours or run 5-6 km. I also go roller blading (skating) for about 20km.
During my hospital stay (16 days) and 3 weeks afterwards I was really fatigued and tired. I also found nausea to be a problem. Strangely I developed mild peripheral neuropathy in my feet after the high dose melphalan and not from receiveng subcutaneous Velcade. I also had problems with high blood sugar levels after receiving dexamethason. I had to take insulin for a couple of months. Now I´m back to normal levels of blood sugar and havn´t used insulin since easter time. The peripheral neuropathy in my feet is also resolving!
After all it seems that I´ve tolerated the treatment just fine and the results seem to be good, at least so far..
I would like to hear some of your opinions on maintenance treatment.
Even if I could be in complete response or near complete response, it seems like the trend in treatment favours maintenance. I haven´t decided yet and to be honest I think living without medication would be great but on the other hand maintenance seem to prolong progression free survival and overall survival.
Palumbo has made some research on this topic and the total therapy at UAMS uses maintenance I believe. I live in Sweden and here we have national guidelines for the treatment of myeloma. It means that in general you will receive the same treatment regardless of where you live or which hospital/clinic you go to. Small differences occur though and you can be part in the decisions regarding treatment options. I received my induction treatment at my local hospital and the auto SCT at the closest university hospital. Wonderful staff with cutting edge knowledge at both hospitals!
Please share your thoughts and experiences on maintenance therapy.
Best regards from Mattias in Sweden
Forums
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Mattias - Name: Mattias
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Solitary plasmacytoma 2009. Myeloma 2013
- Age at diagnosis: 39
Re: What should I do about maintenance therapy?
My husband is on 10mg Revlimid maintenance. He has normal risk cytogenetics and also went into transplant with a 0 M spike. He was deemed in complete response, or actually stringent complete response, at his 100 day check up and is now 7 months out and holding steady at 0 M spike and negative IFE. Light chains are both raised with a normal ratio, so this is considered just reconstitution not an indication of active disease.
We chose maintenance in hopes of pushing out progression free survival for 5 or more years (hopefully) so science can beat this disease down in the mean time!
We chose maintenance in hopes of pushing out progression free survival for 5 or more years (hopefully) so science can beat this disease down in the mean time!
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: What should I do about maintenance therapy?
Hi Blair77!
I think that is a wise decision. Maintenance therapy to keep the myeloma away for a long period of time so research can move forward. Thanks for the input!
I think that is a wise decision. Maintenance therapy to keep the myeloma away for a long period of time so research can move forward. Thanks for the input!
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Mattias - Name: Mattias
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Solitary plasmacytoma 2009. Myeloma 2013
- Age at diagnosis: 39
Re: What should I do about maintenance therapy?
I was going through the same decision last week...whether to go on maintenance therapy or not after my auto stem cell transplant about 4 months ago.
I'm in complete remission with zero m-spike and bone marrow biopsy showed 0% multiple myeloma before the transplant. My transplant doctor suggested I take a wait and see approach and not do any maintenance. My original oncologist told me that he puts most of his multiple myeloma patients on low dose Revlimid/dex maintenance. So I had to make the decision as to whether to do maintenance therapy or not.
I read a recent study stating that they thought it was better for overall survival to have continuous therapy/maintenance for newly diagnosed patients. Here a link to that forum which has a link to the article and study:
https://myelomabeacon.org/forum/continuous-therapy-in-newly-diagnosed-patients-t3403.html
There are probably other studies that show the opposite conclusion, but this one took into consideration both the 1st and 2nd relapse and seemed to show an advantage with continuous therapy. I think I've read other studies using Revlimid that showed no overall survival benefit to continuous therapy.
I finally decided to go with the continuous low-dose Revlimid/dex maintenance therapy. I'd rather err on the side of maintenance even with the possible side effects and risk of secondary cancers. I know other people have made the opposite decision so I'm not saying what's I'm doing is the right thing to do. It's just my best guess at this point. It would be nice if there were more studies that showed a more definitive advantage one way or the other.
There is one question I have for anyone out there: Does anyone know how a doctor decides whether to do the initial maintenance therapy with Revlimid or Velcade (or something else)?
I'm in complete remission with zero m-spike and bone marrow biopsy showed 0% multiple myeloma before the transplant. My transplant doctor suggested I take a wait and see approach and not do any maintenance. My original oncologist told me that he puts most of his multiple myeloma patients on low dose Revlimid/dex maintenance. So I had to make the decision as to whether to do maintenance therapy or not.
I read a recent study stating that they thought it was better for overall survival to have continuous therapy/maintenance for newly diagnosed patients. Here a link to that forum which has a link to the article and study:
https://myelomabeacon.org/forum/continuous-therapy-in-newly-diagnosed-patients-t3403.html
There are probably other studies that show the opposite conclusion, but this one took into consideration both the 1st and 2nd relapse and seemed to show an advantage with continuous therapy. I think I've read other studies using Revlimid that showed no overall survival benefit to continuous therapy.
I finally decided to go with the continuous low-dose Revlimid/dex maintenance therapy. I'd rather err on the side of maintenance even with the possible side effects and risk of secondary cancers. I know other people have made the opposite decision so I'm not saying what's I'm doing is the right thing to do. It's just my best guess at this point. It would be nice if there were more studies that showed a more definitive advantage one way or the other.
There is one question I have for anyone out there: Does anyone know how a doctor decides whether to do the initial maintenance therapy with Revlimid or Velcade (or something else)?
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: What should I do about maintenance therapy?
I was in similar place with transplant and I also developed neuropathy from the transplant melphalan and not from the induction Velcade. I also recovered from transplants and was active very soon after too.
I had tandem transplants in 2012 and still have no sign of disease. I did choose to do maintenance. I receive Velcade (subQ) and steroid once per month. The Velcade hasn't had any side effects but the steroid messes with me. I chose to do the maintenance as I feel that gives me the best chance for prolonged remission. Maybe its not longer, but shouldn't make it worse. It also gives me the feeling that I'm actively fighting this and not just waiting around for it to come back. Given that the side effects have been pretty minimal, it's a good trade off I think.
I also chose Velcade, which is not as common as Revlimid due to side effects, smaller chance of secondary cancer and honestly, Revlimid was just more of a pain to get each month and deal with.
Good luck in your remission and your decisions!
I had tandem transplants in 2012 and still have no sign of disease. I did choose to do maintenance. I receive Velcade (subQ) and steroid once per month. The Velcade hasn't had any side effects but the steroid messes with me. I chose to do the maintenance as I feel that gives me the best chance for prolonged remission. Maybe its not longer, but shouldn't make it worse. It also gives me the feeling that I'm actively fighting this and not just waiting around for it to come back. Given that the side effects have been pretty minimal, it's a good trade off I think.
I also chose Velcade, which is not as common as Revlimid due to side effects, smaller chance of secondary cancer and honestly, Revlimid was just more of a pain to get each month and deal with.
Good luck in your remission and your decisions!
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RayGunter - Name: Ray Gunter
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 38
Re: What should I do about maintenance therapy?
DallasGG and RayGunter, thanks for sharing your thoughts and experiences. I'm opting for maintenance preferably Velcade since I tolerate it pretty well.
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Mattias - Name: Mattias
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Solitary plasmacytoma 2009. Myeloma 2013
- Age at diagnosis: 39
Re: What should I do about maintenance therapy?
Mattias,
Congratulations on completing your transplant and doing so well.
I was really torn about doing maintenance post transplant since I had mine at the beginning of 2010 when the results of the study looking at maintenance therapy was just ending. I really didn't want to do maintenance because one of the reasons for doing the transplant was to beat the myeloma down so that I could be drug free for a while. I finally decided to go ahead with Revlimid maintenance, but 5 days later I had a bad reaction to the Revlimid and my oncologist stopped it. I felt at the time that my body wasn't ready to handle any more chemicals since I hadn't had any problems with Revlimid pre-transplant.
I was drug free for about 35 months when I relapsed and restarted therapy. My oncologist suggested that we restart Revlimid since it had worked so well previously. I felt that my body could handle it at that time. Again I responded very well to it. I've been taking it for 18 months now and just recently stopped it for at least a few weeks because my blood levels have decreased dramatically in the last 6 weeks. This is a known side effect to Revlimid.
Your decision is a difficult one. I think that it is almost as difficult as the decision to do, or not do, a transplant. Neither is the wrong decision.
Good luck making your decision and with continuing to have a good response,
Nancy in Phila
Congratulations on completing your transplant and doing so well.
I was really torn about doing maintenance post transplant since I had mine at the beginning of 2010 when the results of the study looking at maintenance therapy was just ending. I really didn't want to do maintenance because one of the reasons for doing the transplant was to beat the myeloma down so that I could be drug free for a while. I finally decided to go ahead with Revlimid maintenance, but 5 days later I had a bad reaction to the Revlimid and my oncologist stopped it. I felt at the time that my body wasn't ready to handle any more chemicals since I hadn't had any problems with Revlimid pre-transplant.
I was drug free for about 35 months when I relapsed and restarted therapy. My oncologist suggested that we restart Revlimid since it had worked so well previously. I felt that my body could handle it at that time. Again I responded very well to it. I've been taking it for 18 months now and just recently stopped it for at least a few weeks because my blood levels have decreased dramatically in the last 6 weeks. This is a known side effect to Revlimid.
Your decision is a difficult one. I think that it is almost as difficult as the decision to do, or not do, a transplant. Neither is the wrong decision.
Good luck making your decision and with continuing to have a good response,
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: What should I do about maintenance therapy?
Nancy, thank you for sharing your experiences and thoughts. It is a tough decision to make whether to continue with a maintenance program or not. I would really appreciate being off medication and chemo, to really have a break. But I think I will decide to go with maintenance.
Best regards from a rainy Sweden // Mattias
Best regards from a rainy Sweden // Mattias
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Mattias - Name: Mattias
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Solitary plasmacytoma 2009. Myeloma 2013
- Age at diagnosis: 39
Re: What should I do about maintenance therapy?
My experience with Velcade was similar and 8 months after I had a SCT. I didn't have any maintenance and I remained in remission for 3 1/2 years. I started showing signs of the multiple myeloma again this last December and I'm now on my third regimen of Revlimid and my numbers are shrinking.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: What should I do about maintenance therapy?
Mattias, your induction therapy was Velcade Cytoxin Dex? Amazing how quickly you responded, only two cycles?
Best wishes
Best wishes
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