Greetings, Have question regarding the efficacy of SCT's for people who never been in complete remission. At this point , I would classify myself as a refractory myeloma patient. I was diagnosed approximately 4 years ago--considered low risk .Most of my issues have been lytic lesions and a couple pathological fractures.
I've run the gauntlet of all the novel therapies and their combinations.The best response I've obtained have been short periods of VGPR. I'm currently on VCD, as an attempted induction therapy for a SCT. Not sure how well the SCT will work, given I've never been in CR. Don't want to go through all that FUN and then three to six months later my M spike starts rising again. I really don't think the SCT will have much of an effect. Has anyone been in a similar situation? Is there any data regarding SCTs in this type of situation? Thanks for any response.
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Re: SCT efficacy?
I never achieved CR before having the ASCT. My lowest m-spike number was 0.3, but had risen to 0.5 during the month that I was off Revlimid and Dex prior to my transplant. It took about 7 months post transplant to see m-spike numbers reach 0, or no detection. That lasted for about 9 months when the m-spike returned again. Over the last 13 months it has been rising very slowly. My last bloodwork done a month ago it showed that it had risen to 1.1, but still no paraparesis evident.
My oncologist has set a benchmark of 1.0 as the point where treatment would begin again. So, when I see him the next time I'll see if that's still the plan. We both decided that I would start with Rev and Dex again since I had responded well to it in the beginning.
Nancy in Phila
My oncologist has set a benchmark of 1.0 as the point where treatment would begin again. So, when I see him the next time I'll see if that's still the plan. We both decided that I would start with Rev and Dex again since I had responded well to it in the beginning.
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: SCT efficacy?
Thanks for your response. Given the amount of time you've been in remission, do you think the SCT was worth doing? Were you on any maintenance med's post transplant?
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d10018
Re: SCT efficacy?
Hi d,
It's so difficult to know what is right, but I can tell you that if I were in your shoes, I would take my chances and proceed to the SCT. You responded to the novel treatments a lot longer than I did before my SCT, and my numbers didn't even hold after two VDT-PACE treatments as induction therapy. When I finally had the SCT (a year and a half after diagnosis) my m-spike was at 2.66 (and this was after continuous treatment with the best medicine available). My doctor believed the high-dose therapy was still going to be the most effective treatment for me, and post-SCT my spike dropped to 0.9, and then to 0.12 before I had a tandem allo. (My doctor did not believe the autoSCT was going to hold very long, and that is why she persuaded me to have a donor transplant three months later.) But I can tell you that the autoSCT was not difficult for me, and that I would do it again in a heartbeat. In spite of the toxicity, I haven't had any permanent side-effects and feel better than I have in years.
That said, I do know other patients who have not had success, but in our community they seem to be the exception and not the norm. There is a very well-known blogger named Pat Killingsworth who considered his SCT a failure in terms of his m-protein, but it was a success in that the novel treatments began to work for him again (a "reset", so to speak). It never hurts to get a second opinion from another doctor, but I would choose one and then trust him/her, as they are the ones who have seen it all. Your age, your history, and your current issues all contribute to the outcome, but still, miracles do happen every day. I wish you all the best and amazing results, no matter which therapy you undertake! Blessings, Dana
It's so difficult to know what is right, but I can tell you that if I were in your shoes, I would take my chances and proceed to the SCT. You responded to the novel treatments a lot longer than I did before my SCT, and my numbers didn't even hold after two VDT-PACE treatments as induction therapy. When I finally had the SCT (a year and a half after diagnosis) my m-spike was at 2.66 (and this was after continuous treatment with the best medicine available). My doctor believed the high-dose therapy was still going to be the most effective treatment for me, and post-SCT my spike dropped to 0.9, and then to 0.12 before I had a tandem allo. (My doctor did not believe the autoSCT was going to hold very long, and that is why she persuaded me to have a donor transplant three months later.) But I can tell you that the autoSCT was not difficult for me, and that I would do it again in a heartbeat. In spite of the toxicity, I haven't had any permanent side-effects and feel better than I have in years.
That said, I do know other patients who have not had success, but in our community they seem to be the exception and not the norm. There is a very well-known blogger named Pat Killingsworth who considered his SCT a failure in terms of his m-protein, but it was a success in that the novel treatments began to work for him again (a "reset", so to speak). It never hurts to get a second opinion from another doctor, but I would choose one and then trust him/her, as they are the ones who have seen it all. Your age, your history, and your current issues all contribute to the outcome, but still, miracles do happen every day. I wish you all the best and amazing results, no matter which therapy you undertake! Blessings, Dana
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Dana - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: SCT efficacy?
Thanks so much for your insight. I was aware of Pat's outcome. His age and myeloma journey is some what similar to mine. His case gave me pause in regard to SCTs. You have definitely given me more food for thought! Just wish there was some data about refractory myeloma and SCTs. All the best to you as well.
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d10018
Re: SCT efficacy?
I am definitely not the most qualified person to respond to your query about data re: refractory myeloma and ASCT. But I have read that doctors do not all agree on the timing, and that research shows that the ASCT can be effective either as upfront or salvage therapy. I was certainly considered "refractory" at the time (although those close to me were sensitive enough not to use that word, and I only figured it out after the fact!).
Here is an article from the Beacon that touches on the topic:
https://myelomabeacon.org/news/2012/04/10/two-myeloma-experts-debate-role-of-stem-cell-transplantation-in-the-treatment-of-multiple-myeloma/.
I'm sure there are others out there who know of better links???
If there's one thing I've learned the past three years, it's that treatment is more of an art than a science. We have to go with our instincts and with those of our medical team. But if I were refractory (as I was!) and was eligible for a stem-cell transplant (which I barely was, and in fact technically wasn't, since my doctor wanted my m-protein below 1 and it was more than double that), I would take my chances and go for it, unless another alternative presented itself to me. After all, what have we got to lose (except our hair, which I had lost twice before anyway, thanks to the induction therapy!)? As others have said, it's really high dose therapy, and it's been around for a long time. I know some folks have struggled with their transplant, but for me it was all out-patient and really anti-climactic, and I can count on one hand the number of times I was ever nauseous. I know that's not always the case, but it is also OFTEN the case! I guess what I'm trying to say is that the procedure itself would not be enough to deter me, and I hope that you will go for it, too, if that is what your medical team is recommending. With best regards and high hopes for great success, Dana
Here is an article from the Beacon that touches on the topic:
https://myelomabeacon.org/news/2012/04/10/two-myeloma-experts-debate-role-of-stem-cell-transplantation-in-the-treatment-of-multiple-myeloma/.
I'm sure there are others out there who know of better links???
If there's one thing I've learned the past three years, it's that treatment is more of an art than a science. We have to go with our instincts and with those of our medical team. But if I were refractory (as I was!) and was eligible for a stem-cell transplant (which I barely was, and in fact technically wasn't, since my doctor wanted my m-protein below 1 and it was more than double that), I would take my chances and go for it, unless another alternative presented itself to me. After all, what have we got to lose (except our hair, which I had lost twice before anyway, thanks to the induction therapy!)? As others have said, it's really high dose therapy, and it's been around for a long time. I know some folks have struggled with their transplant, but for me it was all out-patient and really anti-climactic, and I can count on one hand the number of times I was ever nauseous. I know that's not always the case, but it is also OFTEN the case! I guess what I'm trying to say is that the procedure itself would not be enough to deter me, and I hope that you will go for it, too, if that is what your medical team is recommending. With best regards and high hopes for great success, Dana
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Dana - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: SCT efficacy?
Dear d10018,
You have had disease for 4 years and it sounds like you have had good responses to past therapies -- it is not all about achieving the holy grail of complete remission, especially for patients with low risk features at diagnosis. As such, I am not convinced you are refractory to treatment.
Regardless, high-dose melphalan therapy with stem cell rescue (the autologous stem cell transplant) does have a place in early or late treatment. A randomized phase 3 study showed no difference in survival when high-dose therapy was administered early or late. However, as you point out, high-dose melphalan applied later in the course of disease often does not lead to as durable of a remission. Also, it can be more difficult to handle when you have had a lot of prior therapy, especially if you have on-going side effects from past treatment. However, if you are in good shape right now and have not suffered excessive side effects of current or past therapies, I think it is something to definitely consider. You just need to be well informed about the procedure, the side effects, etc. Dana's experience with high-dose melphalan was a somewhat easier road than many, but not unusual at all.
Always a tough decision. Best of luck and let us know what you decide to do!
Pete V.
You have had disease for 4 years and it sounds like you have had good responses to past therapies -- it is not all about achieving the holy grail of complete remission, especially for patients with low risk features at diagnosis. As such, I am not convinced you are refractory to treatment.
Regardless, high-dose melphalan therapy with stem cell rescue (the autologous stem cell transplant) does have a place in early or late treatment. A randomized phase 3 study showed no difference in survival when high-dose therapy was administered early or late. However, as you point out, high-dose melphalan applied later in the course of disease often does not lead to as durable of a remission. Also, it can be more difficult to handle when you have had a lot of prior therapy, especially if you have on-going side effects from past treatment. However, if you are in good shape right now and have not suffered excessive side effects of current or past therapies, I think it is something to definitely consider. You just need to be well informed about the procedure, the side effects, etc. Dana's experience with high-dose melphalan was a somewhat easier road than many, but not unusual at all.
Always a tough decision. Best of luck and let us know what you decide to do!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: SCT efficacy?
Dana & Dr. Voorhees,
Thank you both for your insights and concern. I say I'm refractory, due to the fact that although I look good on paper-- my labs have always been fine, B2s normal, kappa light chains in the low hundreds, recent BM biopsy < than 4% plasma cells etc., I continue to have wide spread lytic lesions and bone destructuion-- no matter what meds I'm on. I don't think swiss cheeese has as many holes as I do. I was initially diagnosed via a plasmacytoma on my skull, which was removed. Since then, I've had rib fx's, kyphoplasty to my spine and most recently a rod placed in my L humerus post fx--that was fun! Not to mention radiation to all theses areas as well as others. So if the meds have been working, I have'nt noticed. Pain is my constant companion. Fortunately, I 've always been pretty physical- so none of this has really slowed me down too much--I just keep driving on! Anyway, I don't think my doc knows what else to do, to try and stop my bone destruction. So that's my concern. Since none of these other meds have really seemed to help my bones, why should the SCT ? I realize it's high dose therapy and all, but I just think my myeloma is going to laugh and say, a SCT ? "that's it?, that's all you've got? better luck next time! " I guess we'll see. I'll keep you posted regarding my decision. Thanks Again!!
Thank you both for your insights and concern. I say I'm refractory, due to the fact that although I look good on paper-- my labs have always been fine, B2s normal, kappa light chains in the low hundreds, recent BM biopsy < than 4% plasma cells etc., I continue to have wide spread lytic lesions and bone destructuion-- no matter what meds I'm on. I don't think swiss cheeese has as many holes as I do. I was initially diagnosed via a plasmacytoma on my skull, which was removed. Since then, I've had rib fx's, kyphoplasty to my spine and most recently a rod placed in my L humerus post fx--that was fun! Not to mention radiation to all theses areas as well as others. So if the meds have been working, I have'nt noticed. Pain is my constant companion. Fortunately, I 've always been pretty physical- so none of this has really slowed me down too much--I just keep driving on! Anyway, I don't think my doc knows what else to do, to try and stop my bone destruction. So that's my concern. Since none of these other meds have really seemed to help my bones, why should the SCT ? I realize it's high dose therapy and all, but I just think my myeloma is going to laugh and say, a SCT ? "that's it?, that's all you've got? better luck next time! " I guess we'll see. I'll keep you posted regarding my decision. Thanks Again!!
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d10018
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