I had ASCT [autologous stem cell transplant] in June 2013 after reaching complete remission. I have been doing fine, but my blood counts have been low on a regular basis.
My oncologist would like to start me back on Revlimid 2.5 mg/day as maintenance therapy. My transplant doctor says it isn't necessary and advises against it due to risks of secondary cancers, etc.
I have some cytogenetic issues, I think they are del 13 and t(4:14). I have the decision to make as to which doctor's opinion I should follow. Would you, or would you not, proceed with Revlimid maintenance therapy?
Forums
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Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
Re: Revlimid maintenance or no maintenance?
I just asked my doc at Mayo this question last week. They don't do routine maintenance because of secondary cancer risk and side effects and because the data, arguably limited, doesn't show a survival benefit. They "save" using Revlimid again for relapse.
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wesley - Who do you know with myeloma?: me
- When were you/they diagnosed?: July, 2013
- Age at diagnosis: 60
Re: Revlimid maintenance or no maintenance?
Hmmmm. This somewhat conflicts with the recently published Mayo guidelines
http://www.mayoclinicproceedings.org/article/S0025-6196%2813%2900077-3/fulltext
Search on "maximum" to get to the sentence of interest. I think the operative word is "consider".
Recommendation: Consider lenalidomide maintenance therapy in patients after ASCT for a maximum of 2 years.
http://www.mayoclinicproceedings.org/article/S0025-6196%2813%2900077-3/fulltext
Search on "maximum" to get to the sentence of interest. I think the operative word is "consider".
Recommendation: Consider lenalidomide maintenance therapy in patients after ASCT for a maximum of 2 years.
Last edited by Multibilly on Tue Jan 14, 2014 7:18 pm, edited 1 time in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Revlimid maintenance or no maintenance?
Hi Carol. I have mixed feelings, based on my experience. Both my transplant doctor (Johns Hopkins) and my regular oncologist thought I should take Revlimid as a maintenance drug. This was in 2010. I took it for nearly 3 years, until January of 2013. I had a hard time with it -- I took 10 mg for two weeks, then was off for three or four weeks while my counts came back up. After a little more than 2 years, I had a small M--spike return, which has been increasing slowly ever since. My oncologist finally stopped the Revlimid a year ago, and we've just been watching my proteins since. It took several months for my counts to stabilize -- low, but stable.
One other thing -- I don't have an aggressive form of myeloma or a deletion. That could be a deciding factor.
One other thing -- I don't have an aggressive form of myeloma or a deletion. That could be a deciding factor.
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Revlimid maintenance or no maintenance?
My experience is Velcade/Predinsone which put all my numbers close to remission. I then had an auto 12 months after my original diagnosis. In the 3 1/2 years since I've been hovering in the anemic range without any multiple myeloma indications.
I have never had any maintenance drugs.
I have never had any maintenance drugs.
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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: Revlimid maintenance or no maintenance?
I had two auto SCTs in summer of 2011. At that time the plan was to go onto maintenance Revlimid for years and years.
After some studies came out in January 2012, my myeloma specialist at UCSF had changed his tune. He still rec'd 2-3 years of maintenance but if there were any ill side effects from the therapy, he advised I stop and watch numbers on a monthly basis. So I stopped a few months ago. Staan.
After some studies came out in January 2012, my myeloma specialist at UCSF had changed his tune. He still rec'd 2-3 years of maintenance but if there were any ill side effects from the therapy, he advised I stop and watch numbers on a monthly basis. So I stopped a few months ago. Staan.
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Staan
Re: Revlimid maintenance or no maintenance?
Multibilly -
Based on the study that you linked us to, I suggested to my oncologist that perhaps Velcade was the better maintenance therapy for me (due to adverse cytogenics). He's willing to do that, but wants to find studies indicating its benefit as maintenance, including appropriate dosing.
Do you happen to have knowledge of any links on that?
Based on the study that you linked us to, I suggested to my oncologist that perhaps Velcade was the better maintenance therapy for me (due to adverse cytogenics). He's willing to do that, but wants to find studies indicating its benefit as maintenance, including appropriate dosing.
Do you happen to have knowledge of any links on that?
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Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
Re: Revlimid maintenance or no maintenance?
Hi Carol,
Is it possible for your oncologist to work in conjunction with a myeloma specialist?
My mom's local oncologist happens also to be a myeloma specialist, but he sends her to the large myeloma center close to use, and there the myeloma doc essentially makes the treatment calls, while the local doctor sees my mom every 6 weeks.
Is it possible for your oncologist to work in conjunction with a myeloma specialist?
My mom's local oncologist happens also to be a myeloma specialist, but he sends her to the large myeloma center close to use, and there the myeloma doc essentially makes the treatment calls, while the local doctor sees my mom every 6 weeks.
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: Revlimid maintenance or no maintenance?
Regarding:
>Based on the study that you linked us to, I suggested to my oncologist that perhaps Velcade >was the better maintenance therapy for me (due to adverse cytogenics). He's willing to do that, >but wants to find studies indicating its benefit as maintenance, including appropriate dosing.
>Do you happen to have knowledge of any links on that?
There's been a lot of good discussions on this forum regarding maintenance therapy in the past year, including references to various studies.
It's easy to find them if you just google "Velcade maintenance myelomabeacon" or "Revlimid maintenance myelomabeacon" . You can further qualify the searches with "high risk" to get to those discussions/reports that may be more appropriate if you have adverse cytogenetics.
I assume you might have also just seen the new report that was posted on the Beacon today?
https://myelomabeacon.org/news/2014/01/15/long-term-revlimid-dexamethasone-newly-diagnosed-multiple-myeloma/
>Based on the study that you linked us to, I suggested to my oncologist that perhaps Velcade >was the better maintenance therapy for me (due to adverse cytogenics). He's willing to do that, >but wants to find studies indicating its benefit as maintenance, including appropriate dosing.
>Do you happen to have knowledge of any links on that?
There's been a lot of good discussions on this forum regarding maintenance therapy in the past year, including references to various studies.
It's easy to find them if you just google "Velcade maintenance myelomabeacon" or "Revlimid maintenance myelomabeacon" . You can further qualify the searches with "high risk" to get to those discussions/reports that may be more appropriate if you have adverse cytogenetics.
I assume you might have also just seen the new report that was posted on the Beacon today?
https://myelomabeacon.org/news/2014/01/15/long-term-revlimid-dexamethasone-newly-diagnosed-multiple-myeloma/
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Revlimid maintenance or no maintenance?
I have been on 10 mg maintenance therapy, three weeks on, one week off, for about 2 years now after my SCT. I too have been struggling with this decision to use Revlimid maintenance therapy or not. It has kept my CBC counts low and I do get sick easily and it has been harder to get well again when I do get sick. That has been stable though and I can live with that but Revlimid has been increasing my neuropathy over the last two years.
I got really bad neuropathy from Velcade which resulted in my having to stop using it. I was hospitalized for a week because of nerve damage that caused my blood pressure to be orthostatic. Six months after I had stopped Velcade and just after my SCT I had just a little bit of residual neuropathy left in my toes and that is when I started using Revlimid for maintenance therapy. Over the last two years on Revlimid the neuropathy has been getting worse and now I have burning and stinging in my feet and some in my hands. I also have lost a lot of feeling in my legs below the knee, I cannot tell if an object is sharp or not and have trouble sensing really hot or cold temperatures.
My immunofixation test came back positive last August for the first time in about two years, but no M-spike yet. My Revlimid maintenance was increased to 15 mg from 10mg in August at the recommendation of my SCT doctor and I felt the side effects more, primarily fatigue, and it lowered my counts even further. After 2 months of being sick a lot I went back to 10mg after talking to my oncologist. I discussed stopping Revlimid altogether and taking a drug holiday with my oncologist because of my neuropathy and because I did not have an M-spike yet so I thought the risk was low. We decided to do a bone marrow biopsy first before changing anything, I had not had one in nearly two years. The results came back 5% cancerous plasma cells but the FISH showed no high-risk chromosomal deficiencies. My oncologist was against stopping Revlimid but suggested that, if the neuropathy becomes worse, or signs indicate Revlimid is not working, we can look at other drugs.
What to do? For now I am staying the course with the Revlimid 10mg and at this point for me to do Revlimid maintenance or not is water under the bridge. It has been done. I see the trials that show no or very little difference in overall survival with Revlimid maintenance or not, it seems to just improve progression free survival to first relapse. And then there is the risk of secondary cancers from Revlimid to consider. I knew this when starting my Revlimid maintenance therapy and made my decision with my oncologist. I see the other side of the coin not to do maintenance therapy and wait till relapse has a lot of merit too.
I am waiting to see if my future lab results stay stable a show disease progression and that would force a change of some kind, likely to another drug. If I am stable how long to stay on Revlimid 10mg past the two year point, especially with the increasing secondary cancer risk? I do not know.
I do not know if my experience helps you or not but in the two years I have been on Revlimid maintenance therapy I have read everything that comes up on the Beacon about this subject I can see the pluses and minuses of both sides of the decision.
I got really bad neuropathy from Velcade which resulted in my having to stop using it. I was hospitalized for a week because of nerve damage that caused my blood pressure to be orthostatic. Six months after I had stopped Velcade and just after my SCT I had just a little bit of residual neuropathy left in my toes and that is when I started using Revlimid for maintenance therapy. Over the last two years on Revlimid the neuropathy has been getting worse and now I have burning and stinging in my feet and some in my hands. I also have lost a lot of feeling in my legs below the knee, I cannot tell if an object is sharp or not and have trouble sensing really hot or cold temperatures.
My immunofixation test came back positive last August for the first time in about two years, but no M-spike yet. My Revlimid maintenance was increased to 15 mg from 10mg in August at the recommendation of my SCT doctor and I felt the side effects more, primarily fatigue, and it lowered my counts even further. After 2 months of being sick a lot I went back to 10mg after talking to my oncologist. I discussed stopping Revlimid altogether and taking a drug holiday with my oncologist because of my neuropathy and because I did not have an M-spike yet so I thought the risk was low. We decided to do a bone marrow biopsy first before changing anything, I had not had one in nearly two years. The results came back 5% cancerous plasma cells but the FISH showed no high-risk chromosomal deficiencies. My oncologist was against stopping Revlimid but suggested that, if the neuropathy becomes worse, or signs indicate Revlimid is not working, we can look at other drugs.
What to do? For now I am staying the course with the Revlimid 10mg and at this point for me to do Revlimid maintenance or not is water under the bridge. It has been done. I see the trials that show no or very little difference in overall survival with Revlimid maintenance or not, it seems to just improve progression free survival to first relapse. And then there is the risk of secondary cancers from Revlimid to consider. I knew this when starting my Revlimid maintenance therapy and made my decision with my oncologist. I see the other side of the coin not to do maintenance therapy and wait till relapse has a lot of merit too.
I am waiting to see if my future lab results stay stable a show disease progression and that would force a change of some kind, likely to another drug. If I am stable how long to stay on Revlimid 10mg past the two year point, especially with the increasing secondary cancer risk? I do not know.
I do not know if my experience helps you or not but in the two years I have been on Revlimid maintenance therapy I have read everything that comes up on the Beacon about this subject I can see the pluses and minuses of both sides of the decision.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
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