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Re: Did you feel pushed into a stem cell transplant?
I also have t(4,14) and went through SCT one year ago. My specialist recommended it. However, my M-spike did not change (stays at 0.2 g/dL), and I lost my immune system. My SCT was easy compared to what others have posted here about their experience. Velcade is holding my disease at bay. I will wait for the next phase of my treatment.
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brandywine - Name: brandywine
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 67
Re: Did you feel pushed into a stem cell transplant?
Brandywine,
Does your specialist regard your SCT as "unsuccessful?". Does he think that the results would have been the same if you had just continued on Velcade?
Does your specialist regard your SCT as "unsuccessful?". Does he think that the results would have been the same if you had just continued on Velcade?
Re: Did you feel pushed into a stem cell transplant?
My specialist is almost noncommittal. She simply said the SCT was just "OK".
I go back for my yearly check up in June. Before the SCT, I had no bone lesions, slight anemia (11.5), but back pain, but high M-spike. I responded rapidly to induction, so I think the ABMT clinic thought I would have a complete remission. She said the SCT would give me 4 to 5 years, so that, being along with a husband who can't cook, I decided to proceed and many new treatments are on the market now. My brother said it is a gamble, so I took it. My regular oncologist said I am in very good partial remission.
I go back for my yearly check up in June. Before the SCT, I had no bone lesions, slight anemia (11.5), but back pain, but high M-spike. I responded rapidly to induction, so I think the ABMT clinic thought I would have a complete remission. She said the SCT would give me 4 to 5 years, so that, being along with a husband who can't cook, I decided to proceed and many new treatments are on the market now. My brother said it is a gamble, so I took it. My regular oncologist said I am in very good partial remission.
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brandywine - Name: brandywine
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 67
Re: Did you feel pushed into a stem cell transplant?
Brandywine, because you are also t(4;14), your case is of particular interest to me. I realize, of course, that each patient reacts individually and your results would not necessarily have been mine. Still, I am surprised that your specialist told you that you would probably have four or five years in remission with the SCT. Mine told me that I would probably only have one year to 18 months before relapse. Had I been told that I could have four or five years, I would also have gambled and opted for the SCT, as you did, no question.
I had read in the forum that the high dose chemo that is used during the SCT to reduce residual cancer cells is sometimes not effective with some patients. My specialist told me that there is no way of knowing ahead of time whether the high dose chemo will work or not. As with Velcade or Revlimid and/or the other novel drugs, it is a matter of luck. We take the drugs with the hope that they will work, but sometimes they just do not. Perhaps this accounts for your not achieving a complete response after your transplant.
I wish you good luck with your test results in June. I hope that you have achieved CR or even better. There are others in the forum who have reported that it took quite a number of months after the SCT to finally reach CR or better.
I had read in the forum that the high dose chemo that is used during the SCT to reduce residual cancer cells is sometimes not effective with some patients. My specialist told me that there is no way of knowing ahead of time whether the high dose chemo will work or not. As with Velcade or Revlimid and/or the other novel drugs, it is a matter of luck. We take the drugs with the hope that they will work, but sometimes they just do not. Perhaps this accounts for your not achieving a complete response after your transplant.
I wish you good luck with your test results in June. I hope that you have achieved CR or even better. There are others in the forum who have reported that it took quite a number of months after the SCT to finally reach CR or better.
Re: Did you feel pushed into a stem cell transplant?
I had an ASCT about 2 years ago. I did not feel pressured, but neither did I feel equipped to decide otherwise. I did ask my Oncologist if he were me, and was faced with the decision, what would he do? Without hesitation he said he would get the transplant.
As a result of our many subsequent conversations, I'm certain he would not respond with such adamant confidence today. Similarly, if I had the same choice to make today, I would consider it much more carefully. Bear in mind that I say that having had an excellent result from my transplant.
So while I had a very good result from my transplant, I'm not convinced they're always the best choice. That being said, I did come across this report today:
ASCT Offers Survival Advantage in Elderly Multiple Myeloma Patients - See more at: http://www.cancernetwork.com/multiple-myeloma/asct-offers-survival-advantage-elderly-multiple-myeloma-patients#sthash.fuVmBnzw.dpuf
"The median OS for the full cohort was 43.4 months. For those who underwent ASCT, the median OS was 56 months, compared with only 33.1 months for those who did not (P = .004). The 3-year OS in the ASCT patients was 78.3%, compared with 49.5% in the non-ASCT group."
Aloha
Daniel
As a result of our many subsequent conversations, I'm certain he would not respond with such adamant confidence today. Similarly, if I had the same choice to make today, I would consider it much more carefully. Bear in mind that I say that having had an excellent result from my transplant.
So while I had a very good result from my transplant, I'm not convinced they're always the best choice. That being said, I did come across this report today:
ASCT Offers Survival Advantage in Elderly Multiple Myeloma Patients - See more at: http://www.cancernetwork.com/multiple-myeloma/asct-offers-survival-advantage-elderly-multiple-myeloma-patients#sthash.fuVmBnzw.dpuf
"The median OS for the full cohort was 43.4 months. For those who underwent ASCT, the median OS was 56 months, compared with only 33.1 months for those who did not (P = .004). The 3-year OS in the ASCT patients was 78.3%, compared with 49.5% in the non-ASCT group."
Aloha
Daniel
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DanielR - Name: Daniel Riebow
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 59
Re: Did you feel pushed into a stem cell transplant?
I would like to thank everyone who took the time to answer this post. I learned a great deal and am grateful to you all.
I will be heading to Boston for another multiple myeloma opinion over the summer, which ought to contribute to the conversation, and clear up speculation; in either direction.
Thanks, and best wishes.
I will be heading to Boston for another multiple myeloma opinion over the summer, which ought to contribute to the conversation, and clear up speculation; in either direction.
Thanks, and best wishes.
Re: Did you feel pushed into a stem cell transplant?
DH is on RVD under a leading multiple myeloma specialist in New Hampshire. 2nd opinion was at Dana Farber in Boston.
Yes, feel pressured to do ASCT. Boston suggested participating in the study to delay when we expressed apprehension. NH doc not happy with that. His markers came back intermediate risk since then (+1q and -1p). Only when I came to appointments with research showing that ASCT may actually be countraindicated with -1p has the doctor begun to take me seriously. The more research I bring showing balanced and informed research does the doc realize it's not just fear of the process of one, but that we don't necessarily agree that it should even be done for multiple myeloma and that other multiple myeloma specialists are not all pro ASCT.
For now, DH will not be proceeding with one. He will harvest to appease the doc. His numbers went down after first round but not in subsequent rounds of Velcade. Scans were done last week since he is oligosecretory to check multiple myeloma activity and the tumors and hot spots are not appearing anymore, so that's good.
My frustration is docs not getting into details or defending their advice with research, but I understand not everyone wants that, so I push because it's what I need to support DH.
If he doesn't progress well, will we wonder if he should have? If he were to do one and response doesn't last long, will it have been worth the ordeal and side effects? We take it a day at a time knowing each patient is different and try to go with what we feel confident in, not necessarily what the doc does for everyone.
It is not necessarily an easy choice and I wish you well in your decision and sound balanced medical advice.
Yes, feel pressured to do ASCT. Boston suggested participating in the study to delay when we expressed apprehension. NH doc not happy with that. His markers came back intermediate risk since then (+1q and -1p). Only when I came to appointments with research showing that ASCT may actually be countraindicated with -1p has the doctor begun to take me seriously. The more research I bring showing balanced and informed research does the doc realize it's not just fear of the process of one, but that we don't necessarily agree that it should even be done for multiple myeloma and that other multiple myeloma specialists are not all pro ASCT.
For now, DH will not be proceeding with one. He will harvest to appease the doc. His numbers went down after first round but not in subsequent rounds of Velcade. Scans were done last week since he is oligosecretory to check multiple myeloma activity and the tumors and hot spots are not appearing anymore, so that's good.
My frustration is docs not getting into details or defending their advice with research, but I understand not everyone wants that, so I push because it's what I need to support DH.
If he doesn't progress well, will we wonder if he should have? If he were to do one and response doesn't last long, will it have been worth the ordeal and side effects? We take it a day at a time knowing each patient is different and try to go with what we feel confident in, not necessarily what the doc does for everyone.
It is not necessarily an easy choice and I wish you well in your decision and sound balanced medical advice.
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