Brit,
I'm not sure I can give you or your husband clarity, but I can share my experiences and thoughts. Like Mike, my knowledge is nowhere near that of Multibilly or Mark11, who are great contributors to the Beacon.
I had a transplant in June of 2014, and my circumstances pre-transplant were very similar to your husband's. My transplant went well: back to work 5 days after discharge, myeloma numbers have been good for 9 months now, and I feel good.
The one factor that I think should not be overlooked is your husband's current health status. The transplant process can be quite tough, even when in good health. I was in excellent health when I had the transplant, and not knowing what my health would be like years from now factored into my decision to move forward with the transplant at age 58.
I wrote a column in April of 2014 on why I decided to have the transplant, which you can access, so I won't go beyond the lone point I have made above.
Good luck in your decision!
Steve
Forums
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Steve Mohr - Name: Steve Mohr
- Who do you know with myeloma?: No one
- When were you/they diagnosed?: April 20 12
- Age at diagnosis: 56
Re: SCT timing for intermediate / higher-risk myeloma?
Hi Steve and MikeB,
Thanks for the compliments, but your posts are likely much more beneficial to the community than mine. You both provide experience using the therapies that most people are going to use. I mainly write to provide some hope for younger, high-risk patients. Few patients will ever have the experience that I have had, since few patients are candidates for the therapy route I chose. You are also both realistic about where we are with myeloma therapy currently.
Mark
Thanks for the compliments, but your posts are likely much more beneficial to the community than mine. You both provide experience using the therapies that most people are going to use. I mainly write to provide some hope for younger, high-risk patients. Few patients will ever have the experience that I have had, since few patients are candidates for the therapy route I chose. You are also both realistic about where we are with myeloma therapy currently.
Mark
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Mark11
Re: SCT timing for intermediate / higher-risk myeloma?
Hi Britt,
I just want you to know I am in the same position as your dad and mrozdav. The specialist I saw last week feels the benefit of an upfront SCT is the length of first remission (he feels it will be longer with SCT than novel agents), and, as my husband pointed out to me, that will allow more time to find more treatments.
I am meeting with a second specialist today who contributes to the NCCN guidelines, so it will be interesting to hear her thoughts.
The hardest part is making the decision. The second hardest part is accepting the decision.
Not sure if this helps, but know your dad is not alone!
I just want you to know I am in the same position as your dad and mrozdav. The specialist I saw last week feels the benefit of an upfront SCT is the length of first remission (he feels it will be longer with SCT than novel agents), and, as my husband pointed out to me, that will allow more time to find more treatments.
I am meeting with a second specialist today who contributes to the NCCN guidelines, so it will be interesting to hear her thoughts.
The hardest part is making the decision. The second hardest part is accepting the decision.
Not sure if this helps, but know your dad is not alone!
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: SCT timing for intermediate / higher-risk myeloma?
Hi DanielR,
You quoted this text from a news article:
Could you explain to me what those comments mean? For example, how does not doing an SCT preserve future options when the cancer progresses? Any examples of a myeloma therapy not available to a patient that previously did an auto?
I have not used any myeloma therapy for over 3.5 years since my allo – I am tolerating no therapy very well! Any examples of "better-tolerated, newer drug therapies" that have no side effects like not using any therapy can have?
From what I read, Dr. Berenson keeps his patients on never ending cycles of drugs. A recent study showed a myeloma patients best quality of life is during the first treatment free interval (TFI).
Dr. Berenson's comments are not at all persuasive to me since I can find no peer reviewed papers to back up his comments. Hopefully someone can explain his comments and back them up with some peer reviewed papers.
Mark
You quoted this text from a news article:
"The treatment of multiple myeloma is no longer a 100-yard dash; it is a marathon,” said James R. Berenson, MD, the medical and scientific director of the Institute for Myeloma and Bone Cancer Research in West Hollywood, Calif. According to Dr. Berenson, better-tolerated, newer drug therapies now produce response rates that rival those produced with SCT, while preserving future options when the cancer progresses."
Could you explain to me what those comments mean? For example, how does not doing an SCT preserve future options when the cancer progresses? Any examples of a myeloma therapy not available to a patient that previously did an auto?
I have not used any myeloma therapy for over 3.5 years since my allo – I am tolerating no therapy very well! Any examples of "better-tolerated, newer drug therapies" that have no side effects like not using any therapy can have?
From what I read, Dr. Berenson keeps his patients on never ending cycles of drugs. A recent study showed a myeloma patients best quality of life is during the first treatment free interval (TFI).
Patients enjoy better HRQL when in their first TFI, and the length of the TFI also positively impacts on HRQL This information may be important for patients and their physicians making treatment decisions and has implications for treatment protocols incorporating extended therapy."
Source: S Acaster et al, "Impact of the treatment-free interval on health-related quality of life in patients with multiple myeloma: a UK cross-sectional survey," Supportive Care in Cancer, Feb 2013 (link to article abstract)
Dr. Berenson's comments are not at all persuasive to me since I can find no peer reviewed papers to back up his comments. Hopefully someone can explain his comments and back them up with some peer reviewed papers.
Mark
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Mark11
Re: SCT timing for intermediate / higher-risk myeloma?
This is always a question on my mind, and my oncologist and I may be of different minds about this.
In May 2014, my diagnosis was still MGUS, and I had kappa free light chains of 800. My oncologist made a follow-up appointment for August. I spent June and July feeling pretty normal, except for a weird, flu-like feeling a couple of days a week. In August, my light chains jumped to 5000, and my oncologist immediately started me on RVD cycles. A bone marrow biopsy showed a whopping 90% plasma cells!
I had a total of seven cycles, the light chains plateaued at 700, and a second biopsy showed 14% plasma cells. I would describe this as a good partial response. I currently just finished my first 28-day cycle of carfilzomib [Kyprolis], and, after only two infusions (one week), my light chains dropped to 400.
Now during my RVD cycles, I thought I was tolerating fairly well, but it seems that the effects were more cumulative than expected. I have muscle atrophy / weakness from the dexamethasone, and although my oncologist seems loathe to admit it, damage to my arteries from the Velcade. Every time I got a Velcade injection, I got a new "spider vein" on my calf. I also had a minor heart attack in December, and ended up with a cardiac stent. I have neuropathy in my legs, and am taking Neurotin (gabapentin), with some success.
I was really hoping for a more complete response from fewer RVD cycles, so that I could go to maintenance instead of transplant, but I got a good partial response after seven cycles. The carfilzomib treatment seems promising.
My oncologist feels that maintenance treatment and delayed SCT are more appropriate for patients who have achieved better results with less chemo. Now that the effects of chemo have really kicked in, I like the idea of staying on the same drugs (albeit lower dose) MUCH less. It would be slightly ironic if the carfilzomib cycles brought my hematology #'s down to normal.
In May 2014, my diagnosis was still MGUS, and I had kappa free light chains of 800. My oncologist made a follow-up appointment for August. I spent June and July feeling pretty normal, except for a weird, flu-like feeling a couple of days a week. In August, my light chains jumped to 5000, and my oncologist immediately started me on RVD cycles. A bone marrow biopsy showed a whopping 90% plasma cells!
I had a total of seven cycles, the light chains plateaued at 700, and a second biopsy showed 14% plasma cells. I would describe this as a good partial response. I currently just finished my first 28-day cycle of carfilzomib [Kyprolis], and, after only two infusions (one week), my light chains dropped to 400.
Now during my RVD cycles, I thought I was tolerating fairly well, but it seems that the effects were more cumulative than expected. I have muscle atrophy / weakness from the dexamethasone, and although my oncologist seems loathe to admit it, damage to my arteries from the Velcade. Every time I got a Velcade injection, I got a new "spider vein" on my calf. I also had a minor heart attack in December, and ended up with a cardiac stent. I have neuropathy in my legs, and am taking Neurotin (gabapentin), with some success.
I was really hoping for a more complete response from fewer RVD cycles, so that I could go to maintenance instead of transplant, but I got a good partial response after seven cycles. The carfilzomib treatment seems promising.
My oncologist feels that maintenance treatment and delayed SCT are more appropriate for patients who have achieved better results with less chemo. Now that the effects of chemo have really kicked in, I like the idea of staying on the same drugs (albeit lower dose) MUCH less. It would be slightly ironic if the carfilzomib cycles brought my hematology #'s down to normal.
Re: SCT timing for intermediate / higher-risk myeloma?
Just an update ... As someone wise once said, if you go to 5 different myeloma specialists, you will get 5 different opinions.
The second specialist I saw said that SCT can be delayed. Again, the key is the length of remission. SCT will lengthen it, but, at the end of the day, the overall survival (OS) is still the same. She emphasized that SCT is not a cure, just another "bullet". So, it depends on when and if you want to use that "bullet".
She said it may extend remission by a year (I have posted a thread to try and get a feel for this), but you have to go through so much to get that extra time. So it depends on what is best for you (I'm still not sure myself!)
The second specialist I saw said that SCT can be delayed. Again, the key is the length of remission. SCT will lengthen it, but, at the end of the day, the overall survival (OS) is still the same. She emphasized that SCT is not a cure, just another "bullet". So, it depends on when and if you want to use that "bullet".
She said it may extend remission by a year (I have posted a thread to try and get a feel for this), but you have to go through so much to get that extra time. So it depends on what is best for you (I'm still not sure myself!)
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: SCT timing for intermediate / higher-risk myeloma?
Thank you all, so much, for your responses. Each one has something valuable to add to this very difficult decision.
We are not sure how much the higher risk should factor in to this choice. The fact that my Dad is stage 2 not 1, t(4;14), and IgA. That said, his IgA is now at 161 and his kappa is now at 22, good news. This is his plateau.
I recently read that if a t(4;14) has an early transplant their risk level is near that of a standard risk patient. Dr. Rajkumar, I believe. Our transplanter says more aggressive disease, treat it more aggressively. MRD negativity seems to be a big deal in regards to outcomes and length of remission, CR, not so much.
gardengirl - thank you for the update on your second opinion. The good new is that you and my Dad have the choice of going ahead or waiting; the bad news is you have the choice of going ahead or waiting. Many patients don't have the choice because their response to induction wasn't complete enough. A member of our multiple myeloma support group, diagnosed at the same age as my Dad, t(4;14) IgA Lambda, had his SCT early and has been in remission for 4 years.
Melphalan is really toxic and has lasting effects on the marrow and immune system. We will continue to gather as much information as we can. I know my Dad is anxious to see what the results of his BMB will be. Maybe that will be the deciding factor. He has that test in a week.
We are not sure how much the higher risk should factor in to this choice. The fact that my Dad is stage 2 not 1, t(4;14), and IgA. That said, his IgA is now at 161 and his kappa is now at 22, good news. This is his plateau.
I recently read that if a t(4;14) has an early transplant their risk level is near that of a standard risk patient. Dr. Rajkumar, I believe. Our transplanter says more aggressive disease, treat it more aggressively. MRD negativity seems to be a big deal in regards to outcomes and length of remission, CR, not so much.
gardengirl - thank you for the update on your second opinion. The good new is that you and my Dad have the choice of going ahead or waiting; the bad news is you have the choice of going ahead or waiting. Many patients don't have the choice because their response to induction wasn't complete enough. A member of our multiple myeloma support group, diagnosed at the same age as my Dad, t(4;14) IgA Lambda, had his SCT early and has been in remission for 4 years.
Melphalan is really toxic and has lasting effects on the marrow and immune system. We will continue to gather as much information as we can. I know my Dad is anxious to see what the results of his BMB will be. Maybe that will be the deciding factor. He has that test in a week.
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BallerinaBritt - Name: BallerinaBritt
- Who do you know with myeloma?: dad
- When were you/they diagnosed?: November 3, 2014
- Age at diagnosis: 58
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