Can anyone answer this question who used CyBorD (with or without maintenance)?
P.S. Mildred, you WILL get past this, I promise! You have found a great resource here.
Forums
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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: Remission without a stem cell transplant?
Yes, Virginia, there is remission without stem cell transplant! My husband has responded to Velcade / dex to near remission. He was diagnosed over three years ago.
Get a second opinion if you are still hesitant. We did, and my husband was taken off Revlimid and put on the Velcade. We are hopeful a cure will be in our future.
Many Blessings!
Pat
Get a second opinion if you are still hesitant. We did, and my husband was taken off Revlimid and put on the Velcade. We are hopeful a cure will be in our future.
Many Blessings!
Pat
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Plm
Re: Remission without a stem cell transplant?
Mildred,
First, note that I realize that things are really scary when somebody first gets diagnosed with multiple myeloma. Take heart that the new treatments that are out there really have afforded a lot of multiple myeloma patients quite good results , whether it be with or without a transplant. It also sounds like your husband may be going to MD Anderson for consults, which is a top notch multiple myeloma facility with a lot of expertise.
I am guessing from your question that you are investigating transplant versus non-transplant approaches. "Remission" in the traditional sense (i.e. the cancer is completely gone and doesn't require further treatment) can sometimes be a tough goal to meet when treating multiple myeloma, so I might suggest that you think instead of long-term overall survival (OS) with a high quality of life as the goals to shoot for. At least these are the goals that I've set for myself, should I advance from smoldering to symptomatic multiple myeloma. I've resigned myself to the fact that I may be on some sort of treatment from time to time throughout my life, but that no longer worries me if I can maintain a great life during that process.
Note that with the possible exception of those that undergo an allo transplant, one NEVER gets rid of all the multiple myeloma cells in one's body...there will always be some residual number of multiple myeloma cells and their progenitors hanging around, even if you do reach a strict complete response. The question is whether these cells will progress after treatment and cause a relapse down the line.
To get a better idea of the levels of remission (response) that are possible with multiple myeloma, see Dr. Voorhees' post here:
https://myelomabeacon.org/forum/remission-what-does-it-mean-t1554.html
You might find a couple of these lengthy threads to be of help as you explore this topic of transplant vs non-transplant approaches to treatment:
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
https://myelomabeacon.org/forum/berenson-5-year-os-data-superior-to-uams-t833.html
First, note that I realize that things are really scary when somebody first gets diagnosed with multiple myeloma. Take heart that the new treatments that are out there really have afforded a lot of multiple myeloma patients quite good results , whether it be with or without a transplant. It also sounds like your husband may be going to MD Anderson for consults, which is a top notch multiple myeloma facility with a lot of expertise.
I am guessing from your question that you are investigating transplant versus non-transplant approaches. "Remission" in the traditional sense (i.e. the cancer is completely gone and doesn't require further treatment) can sometimes be a tough goal to meet when treating multiple myeloma, so I might suggest that you think instead of long-term overall survival (OS) with a high quality of life as the goals to shoot for. At least these are the goals that I've set for myself, should I advance from smoldering to symptomatic multiple myeloma. I've resigned myself to the fact that I may be on some sort of treatment from time to time throughout my life, but that no longer worries me if I can maintain a great life during that process.
Note that with the possible exception of those that undergo an allo transplant, one NEVER gets rid of all the multiple myeloma cells in one's body...there will always be some residual number of multiple myeloma cells and their progenitors hanging around, even if you do reach a strict complete response. The question is whether these cells will progress after treatment and cause a relapse down the line.
To get a better idea of the levels of remission (response) that are possible with multiple myeloma, see Dr. Voorhees' post here:
https://myelomabeacon.org/forum/remission-what-does-it-mean-t1554.html
You might find a couple of these lengthy threads to be of help as you explore this topic of transplant vs non-transplant approaches to treatment:
https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
https://myelomabeacon.org/forum/berenson-5-year-os-data-superior-to-uams-t833.html
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Remission without a stem cell transplant?
The above posting raises a point that I have a question about.
As far as I understand it, the only difference between allo and auto transplants (aside from possible graft disease) is that, in one case (allo), donor cells are injected, and, in the other (auto), ones own stem cells are injected.
Above it implies that allo transplants can indeed result in a complete irradication of cancer cells and their progenitors ("with the possible exception of those that undergo an allo transplant, one NEVER gets rid of all the multiple myeloma cells in one's body ... there will always be some residual number of multiple myeloma cells and their progenitors hanging around, even if you do reach a strict complete response. The question is whether these cells will progress after treatment and cause a relapse down the line.").
Wouldn't that mean in auto transplants some cancer cells or progenitors are being reinfused?
As far as I understand it, the only difference between allo and auto transplants (aside from possible graft disease) is that, in one case (allo), donor cells are injected, and, in the other (auto), ones own stem cells are injected.
Above it implies that allo transplants can indeed result in a complete irradication of cancer cells and their progenitors ("with the possible exception of those that undergo an allo transplant, one NEVER gets rid of all the multiple myeloma cells in one's body ... there will always be some residual number of multiple myeloma cells and their progenitors hanging around, even if you do reach a strict complete response. The question is whether these cells will progress after treatment and cause a relapse down the line.").
Wouldn't that mean in auto transplants some cancer cells or progenitors are being reinfused?
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Ginny - Name: Ginny
- Who do you know with myeloma?: self and four friends
- When were you/they diagnosed?: October, 2012
- Age at diagnosis: 62
Re: Remission without a stem cell transplant?
Ginny,
Regarding the point "Wouldn't that mean in auto transplants some cancer cells or progenitors are being reinfused?", the answer is "yes".
The auto stem cell and accompanying cancer-cell purging process is imperfect and cancer cells can and will be re-introduced back into one's system. The high dose conditioning chemotherapy is also imperfect and may not kill all of the cancer cells in your system. And at the end of the day, you will still have your original immune system, that was and will be imperfect at dealing with these cancer cells.
Regarding the point "Wouldn't that mean in auto transplants some cancer cells or progenitors are being reinfused?", the answer is "yes".
The auto stem cell and accompanying cancer-cell purging process is imperfect and cancer cells can and will be re-introduced back into one's system. The high dose conditioning chemotherapy is also imperfect and may not kill all of the cancer cells in your system. And at the end of the day, you will still have your original immune system, that was and will be imperfect at dealing with these cancer cells.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Remission without a stem cell transplant?
Hi JiminSD,
Thanks for the informative posts and links. I will check out the new ones later. I hope everybody read your replies as they were very well thought out.
I actually agree with most of what you wrote. As I should have mentioned before, I am writing through the eyes of a high risk younger patient. My original plan was to do Velcade-based induction to get to a complete response and then do an allo transplant. I was not planning on doing an auto myself, so I can understand your point about it only being a high dose of a single drug.
One of my "pet peeves" is when I hear myeloma docs who recommend autos talk about how allo transplants need to be improved. My own experience tells me that the docs who do allos have improved the procedure greatly, as I have nothing but positive things to say about my "allo experience". In my opinion, the therapy that needs the most improving is the auto with respect to making it a more effective therapy.
Great to hear that your quality of life is excellent and that you have not had side effects from BiRD.
Mark
Thanks for the informative posts and links. I will check out the new ones later. I hope everybody read your replies as they were very well thought out.
I actually agree with most of what you wrote. As I should have mentioned before, I am writing through the eyes of a high risk younger patient. My original plan was to do Velcade-based induction to get to a complete response and then do an allo transplant. I was not planning on doing an auto myself, so I can understand your point about it only being a high dose of a single drug.
One of my "pet peeves" is when I hear myeloma docs who recommend autos talk about how allo transplants need to be improved. My own experience tells me that the docs who do allos have improved the procedure greatly, as I have nothing but positive things to say about my "allo experience". In my opinion, the therapy that needs the most improving is the auto with respect to making it a more effective therapy.
Great to hear that your quality of life is excellent and that you have not had side effects from BiRD.
Mark
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Mark11
Re: Remission without a stem cell transplant?
Hi GinnyD,
You wrote:
Multibilly gave a good answer and I am just going to add a little to it. If a patient gets cured from an allogeneic transplant, it is because the donor immune system recognizes and kills the remaining myeloma "stem cell" / progenitor cell(s). It is not because they used high dose chemotherapy and had a clean graft. An allogeneic transplant is sometimes referred to as "non specific" immunotherapy, and it is the most successful form of immunotherapy for blood cancer to date.
You may have heard / read a patient say that their sibling is a perfect match or that they found a perfect match on the Be The Match Registry. However, there really are no perfect matches other than exact twins.
Patients are typically matched on 10 major histocompatibility antigens. However, the minor histocompatibility antigens are different (other than exact twins). It is those differences which gives the donor immune system the ability to identify the remaining progenitor cells. It is also those differences that can lead to graft vs host disease.
Take my case for instance. After I stopped taking my anti-rejection meds 6 months after transplant, I had a minor skin rash and sore gums for one month. They went away and I currently have no signs of GVHD and have not taken any immunosuppressive meds since December 2011.
In my opinion, a skin rash and sore gums for a month is very worth it if I never relapse. All therapies have side effects, but GVHD is the only side effect that I am aware of that is associated with a cure of blood cancer.
Mark
You wrote:
As far as I understand it, the only difference between allo and auto transplants (aside from possible graft disease) is that, in one case (allo), donor cells are injected, and, in the other (auto), ones own stem cells are injected.
Above it implies that allo transplants can indeed result in a complete irradication of cancer cells and their progenitors ("with the possible exception of those that undergo an allo transplant, one NEVER gets rid of all the multiple myeloma cells in one's body ... there will always be some residual number of multiple myeloma cells and their progenitors hanging around, even if you do reach a strict complete response. The question is whether these cells will progress after treatment and cause a relapse down the line.").
Wouldn't that mean in auto transplants some cancer cells or progenitors are being reinfused?
Multibilly gave a good answer and I am just going to add a little to it. If a patient gets cured from an allogeneic transplant, it is because the donor immune system recognizes and kills the remaining myeloma "stem cell" / progenitor cell(s). It is not because they used high dose chemotherapy and had a clean graft. An allogeneic transplant is sometimes referred to as "non specific" immunotherapy, and it is the most successful form of immunotherapy for blood cancer to date.
You may have heard / read a patient say that their sibling is a perfect match or that they found a perfect match on the Be The Match Registry. However, there really are no perfect matches other than exact twins.
Patients are typically matched on 10 major histocompatibility antigens. However, the minor histocompatibility antigens are different (other than exact twins). It is those differences which gives the donor immune system the ability to identify the remaining progenitor cells. It is also those differences that can lead to graft vs host disease.
Take my case for instance. After I stopped taking my anti-rejection meds 6 months after transplant, I had a minor skin rash and sore gums for one month. They went away and I currently have no signs of GVHD and have not taken any immunosuppressive meds since December 2011.
In my opinion, a skin rash and sore gums for a month is very worth it if I never relapse. All therapies have side effects, but GVHD is the only side effect that I am aware of that is associated with a cure of blood cancer.
Mark
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Mark11
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