My husband was diagnosed in 2009. He did Revlimid and dexamethasone followed by a stem cell transplant. He was in complete remission for the past seven years (no maintenance).
He has recently showed progression. Our oncologist is recommending the same regimen that he did 7 years ago.
We are unsure, as there have been many new therapies since then.
Has anyone had a similar experience, and what was your second line of treatment?
Foundation
Forums
Re: Repeat initial therapy after 7 years in remission?
I would go with what worked initially. The fact that he has been maintenance free indicates there is a strong likelihood that the older protocol will work. I would personally hold the newer drugs in reserve in the event of drug resistance. I would suggest you have a discussion with your oncologist and go over your concerns.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Repeat initial therapy after 7 years in remission?
I completely agree with Ron, and kudos to your husband's doctor for recognizing the sense in trying again what worked so well for your husband the first time.
If you want your husband around a long time, you want to make sure that he is treated with all myeloma therapies possible, and that his treatment with each therapy is until it is no longer effective.
I would be more suspicious of a doctor who told you "Eh, we've used Revlimid once. Why don't we instead use this shiny new myeloma therapy that's just been approved."
That doctor would basically be throwing out the window, potentially never to be used again, a therapy that did a HUGE number on your husband's myeloma the first time around.
If you want your husband around a long time, you want to make sure that he is treated with all myeloma therapies possible, and that his treatment with each therapy is until it is no longer effective.
I would be more suspicious of a doctor who told you "Eh, we've used Revlimid once. Why don't we instead use this shiny new myeloma therapy that's just been approved."
That doctor would basically be throwing out the window, potentially never to be used again, a therapy that did a HUGE number on your husband's myeloma the first time around.
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Jonah
Re: Repeat initial therapy after 7 years in remission?
I agree with Ron and Jonah.
I have been in remission for three years now after my own autologous transplant. Since I have 'high risk" multiple myeloma (the dreaded p17 deletion), my own docs have been rather excited about the length of this remission which, at this moment, is still called 'complete."
What one of 'em told me is that when a transplant works this well the first time, the odds are really good that it will work really well the second time. In fact, the decision has already been made by my 'team' and me that when I do relapse (and that could still be years down the road) a repeat transplant with those little miracle cells will be the first 'go-to' therapy.
I can't put my finger on the study that confirms that idea, but it is out there if someone else here happens to remember where to find it.
I think this is a case of 'if it ain't broke, don't fix it.'
Please, please, however, talk to your husband's oncology team. I'll bet you that THEY have access to that study I can't seem to find.
I have been in remission for three years now after my own autologous transplant. Since I have 'high risk" multiple myeloma (the dreaded p17 deletion), my own docs have been rather excited about the length of this remission which, at this moment, is still called 'complete."
What one of 'em told me is that when a transplant works this well the first time, the odds are really good that it will work really well the second time. In fact, the decision has already been made by my 'team' and me that when I do relapse (and that could still be years down the road) a repeat transplant with those little miracle cells will be the first 'go-to' therapy.
I can't put my finger on the study that confirms that idea, but it is out there if someone else here happens to remember where to find it.
I think this is a case of 'if it ain't broke, don't fix it.'
Please, please, however, talk to your husband's oncology team. I'll bet you that THEY have access to that study I can't seem to find.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Repeat initial therapy after 7 years in remission?
Thank you for your feedback. We are also concerned about the safety of repeating melphalan and hoping that there is a treatment that isn't as hard on the body as transplant. Your comments and insights are very helpful.
Re: Repeat initial therapy after 7 years in remission?
Hi Wife101,
EJ was somewhat similar to your husband. He was diagnosed in 2010, had his stem cell transplant in 2011, and no maintenance, and just relapsed earlier this year. His induction therapy was Velcade and dex, and we were given the option of Velcade, Revlimid, and dex, or Ninlaro (ixazomib), Revlimid, and dex. EJ decided to do Ninlaro, Revlimid, and dex because it was all oral and therefore more convenient (fewer trips to the oncologist), and because the response rates are so good. He's completed 5 full cycles and his M-spike has gone from 0.7 g/dl to 0.2 (7 g/l to 2 g/l).
As it was explained to us, this doesn't take Velcade off the table. If he needs it in the future, it is still an option.
Hope this helps.
Lyn
EJ was somewhat similar to your husband. He was diagnosed in 2010, had his stem cell transplant in 2011, and no maintenance, and just relapsed earlier this year. His induction therapy was Velcade and dex, and we were given the option of Velcade, Revlimid, and dex, or Ninlaro (ixazomib), Revlimid, and dex. EJ decided to do Ninlaro, Revlimid, and dex because it was all oral and therefore more convenient (fewer trips to the oncologist), and because the response rates are so good. He's completed 5 full cycles and his M-spike has gone from 0.7 g/dl to 0.2 (7 g/l to 2 g/l).
As it was explained to us, this doesn't take Velcade off the table. If he needs it in the future, it is still an option.
Hope this helps.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Repeat initial therapy after 7 years in remission?
Wow, seven years remission with no maintenance is really impressive. Some good replies here, I was wondering what age your husband was. Stem cell transplants can be tough on the organs and sometimes are worse on older patients.
I tend to agree with your oncologist on another stem cell transplant simply based on the abnormal effectiveness of the first one, but probably after a few cycles of Revlimid / etc. to see if you can stabilize or even reduce myeloma activity.
I tend to agree with your oncologist on another stem cell transplant simply based on the abnormal effectiveness of the first one, but probably after a few cycles of Revlimid / etc. to see if you can stabilize or even reduce myeloma activity.
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The Laker
Re: Repeat initial therapy after 7 years in remission?
Thanks for your response. My husband is 58. The stem cell transplant was an awful experience. That's why we don't want to go through it again. It is very hard on the body and the melphalan is so toxic. That's why we were questioning if anyone has had results like this with the newer therapies.
Re: Repeat initial therapy after 7 years in remission?
Not sure if you will find this helpful, but the Mayo Clinic recently updated its guideline on treatment after relapse. Here is the link to the guideline.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Repeat initial therapy after 7 years in remission?
Hello Wife:
You ask a very fair question about others with similar experiences. Refer to the recent trials on maintenance done by CALGB and the IFM. In your husband's case, the average time to first relapse for Revlimid, Velcade, and dexamethasone induction and an autologous stem cell transplant is something like in the range of 40 months (off the top of my head). Your husband had the induction only with a doublet (no proteasome inhibitor) and the stem cell transplant and still received an initial first remission of 7 years (80+ months), more than double the averages of recent studies. You are so far out on the curves to the good side that there may not be too many out there with a similar enough experience posting here in the forum to inform you. Your time to first relapse was longer than the people who had continuous maintenance, yet you did not have any maintenance.
As others have posted, if it has worked once, it is likely going to work again. The issue, as I read it, is that you are reluctant to go to the stem cell transplant. Quite frankly, though it was hard, it did seem to work.
If you wanted to avoid the second transplant, that would be very understandable, and a sentiment expressed by many posters. In that case, I do think it would be important to step up the game by adding at least a triplet. You are in this day and age a bit unique, in that not having Revlimid maintenance, that you are NOT refractory to Revlimid. If you had Revlimid maintenance, then you would be refractory to Revlimid (at least at the maintenance level dosage). This is a very interesting circumstance.
If you opted out of the transplant, I think the next logical step would be Revlimid, Velcade, and dexamethasone (RVD). I would advise that arguments regarding "older" regimens or "newer" regimens miss the point. What you want to do is to get the same depth of response you got the first time. Since your remission was so long, I am guessing that you got to a complete response (CR). An interesting and potentially important question is whether or not you got to CR at first before or after the transplant. If you could not get to CR with RVD, then I would potentially look at Kyprolis, Revlimid, and dexamethasone (KRD).
If you were able to get the stringent CR, and minimal residual disease (MRD) negative on your "second line of treatment", I would think that you could expect a long second remission (even if it was a little bit less than the first). If you could not get the same response, I would guess that the expected duration of second remission would potentially be a lot less.
Just to repeat, all of the above is just my read of the recent literature, I am not a doctor or medically trained. Good luck to you both.
You ask a very fair question about others with similar experiences. Refer to the recent trials on maintenance done by CALGB and the IFM. In your husband's case, the average time to first relapse for Revlimid, Velcade, and dexamethasone induction and an autologous stem cell transplant is something like in the range of 40 months (off the top of my head). Your husband had the induction only with a doublet (no proteasome inhibitor) and the stem cell transplant and still received an initial first remission of 7 years (80+ months), more than double the averages of recent studies. You are so far out on the curves to the good side that there may not be too many out there with a similar enough experience posting here in the forum to inform you. Your time to first relapse was longer than the people who had continuous maintenance, yet you did not have any maintenance.
As others have posted, if it has worked once, it is likely going to work again. The issue, as I read it, is that you are reluctant to go to the stem cell transplant. Quite frankly, though it was hard, it did seem to work.
If you wanted to avoid the second transplant, that would be very understandable, and a sentiment expressed by many posters. In that case, I do think it would be important to step up the game by adding at least a triplet. You are in this day and age a bit unique, in that not having Revlimid maintenance, that you are NOT refractory to Revlimid. If you had Revlimid maintenance, then you would be refractory to Revlimid (at least at the maintenance level dosage). This is a very interesting circumstance.
If you opted out of the transplant, I think the next logical step would be Revlimid, Velcade, and dexamethasone (RVD). I would advise that arguments regarding "older" regimens or "newer" regimens miss the point. What you want to do is to get the same depth of response you got the first time. Since your remission was so long, I am guessing that you got to a complete response (CR). An interesting and potentially important question is whether or not you got to CR at first before or after the transplant. If you could not get to CR with RVD, then I would potentially look at Kyprolis, Revlimid, and dexamethasone (KRD).
If you were able to get the stringent CR, and minimal residual disease (MRD) negative on your "second line of treatment", I would think that you could expect a long second remission (even if it was a little bit less than the first). If you could not get the same response, I would guess that the expected duration of second remission would potentially be a lot less.
Just to repeat, all of the above is just my read of the recent literature, I am not a doctor or medically trained. Good luck to you both.
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JPC - Name: JPC
28 posts
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