Hello fellow myeloma patients, and thank you all for you input and advice.
I made the decision to put off the allo transplant for now and instead i am currently on the newly approved Darzalex (daratumumab). I first started it a few months ago when first approved and was one of the first patients. It was interrupted by a tumor on my sternum, which fractured my sternum, so I went to the hospital for a week-long IV treatment (VDT-PACE). This cleared up the tumor and fracture started to heal.
Now back on the Darzalex for my fifth week and so far so good. Very little side effects and all my numbers have been steadily coming down – M-spike, light chains, all down, and both doctors and myself are pleased so far. This drug has not been around long enough to know if it's going to give me relief for months or years, so they still want me to keep in mind an allo stem cell transplant, which I am still hesitant about. The Darzalex is currently a weekly treatment, but will change to every other week after eight weeks, so I anxious to have two weeks off for the first time in years!!!
In my recent doctor visit I was told about a treatment being done in Pennsylvania called CAR T-cell, so maybe there's another option before the ultimate allo transplant. I honestly don't know if I'm making a mistake always wanting to put off the allo. They say it's best while feeling your best, but currently I only have a 90 percent match. There was a 100 percent out there, but not available till 2017. I'm hoping this person is still available in 2017 which maybe is my time?
Thanks again everyone and I promise I will reply sooner then four month intervals.
Be well everyone,
Gary
Forums
Re: Decision time: allogeneic (donor) stem cell transplant
I am in a similar situation to you. I am 49 years old; I was diagnosed in 2011 and since then have been on Velcade, Revlimid, and Pomalyst. I am refractory to Velcade and Revlimid.
Early last year, I relapsed with a new myeloma clone. I now have light chain myeloma. I was on Pomalyst and it worked very well for the first cycle, lowering my kappa light chains from over 3000 to about 100. But in the next cycles, I had problems tolerating the drug as it was very hard on my WBC and would drive me into neutropenia. I have been hospitalized 3 times in the last 4 months. Lowering the dose to 3 mg and adding Kyprolis was tried, but I ended up in the hospital after just one week with neutropenia and pneumonia. Currently I am on just Kyprolis and dexamethasone, but I do not know how well it is working yet.
Currently my myeloma is not under control and active. I have had back pain return. What has been the real wake up call for me is that, based on my current health and level of disease, my stem cell transplant doctor said he could not do another auto transplant. That leaves me with a small choice of remaining drug therapies. We do not know if Kyprolis will work yet and there is daratumumab, but there is no certainty that drug will work either, but if Kyprolis fails that is the next choice.
But what then after that? These drugs are not cures and they will fail eventually too, maybe after just a few months. Searching for clinical trials at hospitals some distance from me that may have uncertain results?
After consulting with my stem cell transplant doctor, the current plan is to try and get my disease level under control as soon as possible and then proceed with an auto transplant to clean up my bone marrow as much as possible, then proceed to a donor transplant while there is still time do so. A donor search is underway. This is all dependent on if I can get my disease level under control with drug therapies to begin with.
I have been put off by donor transplants because of the risk involved, but at this point in time the risk of continuing with drug therapies seems equally high. There is no cure for myeloma with drug therapies and it appears that if I can get into remission again I should not expect it to last that long, months instead of years.
Yes, there are a lot of immunotherapy drugs in the pipeline, but time is running out for me. A donor transplant, if successful, appears to be the only option that has the possibility, though less than 50%, of controlling my myeloma for years to come. My best guess is with continuing drug therapies alone I may have another year or two left and there is no assurance the quality of life would be as good as it has been in the past while I was in remission for a number of years.
What my doctor and I also see is I am still fairly young and if successful I have the possibility of many years ahead of me to live. If I was much older (near end of life), it would make sense to continue with drug therapies.
Early last year, I relapsed with a new myeloma clone. I now have light chain myeloma. I was on Pomalyst and it worked very well for the first cycle, lowering my kappa light chains from over 3000 to about 100. But in the next cycles, I had problems tolerating the drug as it was very hard on my WBC and would drive me into neutropenia. I have been hospitalized 3 times in the last 4 months. Lowering the dose to 3 mg and adding Kyprolis was tried, but I ended up in the hospital after just one week with neutropenia and pneumonia. Currently I am on just Kyprolis and dexamethasone, but I do not know how well it is working yet.
Currently my myeloma is not under control and active. I have had back pain return. What has been the real wake up call for me is that, based on my current health and level of disease, my stem cell transplant doctor said he could not do another auto transplant. That leaves me with a small choice of remaining drug therapies. We do not know if Kyprolis will work yet and there is daratumumab, but there is no certainty that drug will work either, but if Kyprolis fails that is the next choice.
But what then after that? These drugs are not cures and they will fail eventually too, maybe after just a few months. Searching for clinical trials at hospitals some distance from me that may have uncertain results?
After consulting with my stem cell transplant doctor, the current plan is to try and get my disease level under control as soon as possible and then proceed with an auto transplant to clean up my bone marrow as much as possible, then proceed to a donor transplant while there is still time do so. A donor search is underway. This is all dependent on if I can get my disease level under control with drug therapies to begin with.
I have been put off by donor transplants because of the risk involved, but at this point in time the risk of continuing with drug therapies seems equally high. There is no cure for myeloma with drug therapies and it appears that if I can get into remission again I should not expect it to last that long, months instead of years.
Yes, there are a lot of immunotherapy drugs in the pipeline, but time is running out for me. A donor transplant, if successful, appears to be the only option that has the possibility, though less than 50%, of controlling my myeloma for years to come. My best guess is with continuing drug therapies alone I may have another year or two left and there is no assurance the quality of life would be as good as it has been in the past while I was in remission for a number of years.
What my doctor and I also see is I am still fairly young and if successful I have the possibility of many years ahead of me to live. If I was much older (near end of life), it would make sense to continue with drug therapies.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Decision time: allogeneic (donor) stem cell transplant
Eric,
Sorry for your predicament. But for what it is worth - you seem to have thoroughly researched and educated yourself on your options and have a rational and well thought out plan.
Good luck on your journey,
C
Sorry for your predicament. But for what it is worth - you seem to have thoroughly researched and educated yourself on your options and have a rational and well thought out plan.
Good luck on your journey,
C
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: Decision time: allogeneic (donor) stem cell transplant
Hello Eric:
Thank you for the update on your issues (relapse), though I am sorry to hear that you are going through it. I hope, as you say, you get an optimal response from the daratumumab, and that your plan works well. Good luck to you. Regards, JPC
Thank you for the update on your issues (relapse), though I am sorry to hear that you are going through it. I hope, as you say, you get an optimal response from the daratumumab, and that your plan works well. Good luck to you. Regards, JPC
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JPC - Name: JPC
Re: Decision time: allogeneic (donor) stem cell transplant
Eric,
I am sorry to hear that your relapse is not under control yet. I wonder if your doctor has thought about trying some of the "older" therapies, at least for now, to get you into a response mode. I'm talking about cyclophosphamide, bendamustine, etc. I have heard they can work in the short term, long enough to get you to transplant. I know the side effects on these are not fun, but I'm sure you would try them, if there was a chance they could work for you.
I hope you are able to find a solution. Do you go to a myeloma specialist? Would you consult with another one, on the chance that they might have some ideas for you?
Keep us posted! Best of luck!
I am sorry to hear that your relapse is not under control yet. I wonder if your doctor has thought about trying some of the "older" therapies, at least for now, to get you into a response mode. I'm talking about cyclophosphamide, bendamustine, etc. I have heard they can work in the short term, long enough to get you to transplant. I know the side effects on these are not fun, but I'm sure you would try them, if there was a chance they could work for you.
I hope you are able to find a solution. Do you go to a myeloma specialist? Would you consult with another one, on the chance that they might have some ideas for you?
Keep us posted! Best of luck!
Re: Decision time: allogeneic (donor) stem cell transplant
Eric,
Well, that's ... what I really want to say here isn't appropriate for a family audience.
Did you find these decisions difficult to make? Or were the choices pretty clear in your mind, given the circumstances?
I'll be following your course.
Well, that's ... what I really want to say here isn't appropriate for a family audience.
Did you find these decisions difficult to make? Or were the choices pretty clear in your mind, given the circumstances?
I'll be following your course.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Decision time: allogeneic (donor) stem cell transplant
Eric,
Tough decisions for you, but you seem to have a very good plan. I hope Kyprolis brings your numbers down.
When faced with such decisions, we can only go with what we think is best. I think of Pat K. and his decisions and how it ended. Very tough.
Personally, I don't think I'd go thru an allo, but then I'm older than you. I'm not even sure I'd go thru another auto. But you never know till that time comes to make very tough decisions.
Best to you and I hope you get good news soon!
Tough decisions for you, but you seem to have a very good plan. I hope Kyprolis brings your numbers down.
When faced with such decisions, we can only go with what we think is best. I think of Pat K. and his decisions and how it ended. Very tough.
Personally, I don't think I'd go thru an allo, but then I'm older than you. I'm not even sure I'd go thru another auto. But you never know till that time comes to make very tough decisions.
Best to you and I hope you get good news soon!
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Christina - Name: Christina
- When were you/they diagnosed?: June2005
- Age at diagnosis: 52
Re: Decision time: allogeneic (donor) stem cell transplant
Eric,
My wife is 55 now but started her multiple myeloma journey at 40.
She was on Kyprolis, Pomalyst, and dex and had the same problems with white blood counts (ANC extremely low). When she dropped Pomalyst, her numbers shot up uncontrollably. We were really scared because she is highly refractory/relapsed.
She is now on Darzalex (daratumumab), Pomalyst, and dex and is having radical, tremendous results.
Pomalyst works wonders for my wife, and her doctor worries that if he takes her off it she will relapse.
She is doing ok with a reduced dosage of Pomalyst. She takes 2 mg 4 days a week in a 28-day cycle.
I would try and stay on Pomalyst even if you can only handle a lower-dose regimen. Also Darzalex, Pomalyst, and dex has a high 70% response rate. Darzalex is very well tolerated as well and is now FDA approved.
P.s. We also wanted an allo, but the transplant doctor didn't want to give it to her because he has bad results with allo on refractory / relapsed patients and it's not worth the risks.
My wife is 55 now but started her multiple myeloma journey at 40.
She was on Kyprolis, Pomalyst, and dex and had the same problems with white blood counts (ANC extremely low). When she dropped Pomalyst, her numbers shot up uncontrollably. We were really scared because she is highly refractory/relapsed.
She is now on Darzalex (daratumumab), Pomalyst, and dex and is having radical, tremendous results.
Pomalyst works wonders for my wife, and her doctor worries that if he takes her off it she will relapse.
She is doing ok with a reduced dosage of Pomalyst. She takes 2 mg 4 days a week in a 28-day cycle.
I would try and stay on Pomalyst even if you can only handle a lower-dose regimen. Also Darzalex, Pomalyst, and dex has a high 70% response rate. Darzalex is very well tolerated as well and is now FDA approved.
P.s. We also wanted an allo, but the transplant doctor didn't want to give it to her because he has bad results with allo on refractory / relapsed patients and it's not worth the risks.
Re: Decision time: allogeneic (donor) stem cell transplant
Sorry to hear about your situation, Eric.
Thelimeusa summed it up perfectly:
Allos should really be looked at as consolidation and maintenance of first remission. There was an interview with Robin Roberts' transplant doctor from back in 2011 that I think summed up perfectly who should be looking to do an allo transplant.
"Oncologists frequently see multiple myeloma patients in their practice who have achieved a stringent complete response (CR) after receiving several cycles of combination therapy, such as bortezomib plus thalidomide plus dexamethasone, followed by an autologous SCT. “These patients ask, ‘Can I be cured? What is my life expectancy? Will my disease come back?’” Dr. Giralt said in his presentation at the meeting. “There is a chance these patients will be cured, but more likely the disease will come back and will be more difficult to control due to clonal evolution, and will be more difficult to control with chemotherapy.”
The question for these patients is “would replacement of their bone marrow with the bone marrow and immune system of someone else be able to achieve long-term disease control? That is, can I do SCT and exploit the graft-versus-myeloma [GvM] effect that will prevent the disease from coming back. Is the risk of the procedure worth the benefit?”"
"In summary, Dr. Giralt said, “current results with both autologous and allogeneic SCT justify the following patterns of care: in standard practice allogeneic SCT can be offered to patients with high-risk disease, or younger patients with standard risk disease who are highly motivated and well-informed. Allogeneic SCT as consolidation of a first remission should preferentially be performed under the auspices of a clinical trial. Autologous SCT remains the most reasonable consolidative therapy for myeloma patients today.” [1]
Allos are definitely not a good "therapy of last resort" or "one shot miracle cure".
The one point I would make that never comes up in these discussions with patients that never did allo transplants are how great a patients quality of life can be after doing one. I did partially t cell depleted allo and this study was very influential in making it an easy decision for me to do the allo in first complete response. My experience with respect to quality of life is right in line with this study as I am just short of 5 years since my allo.
Allogeneic hematopoietic stem cell transplantation (HSCT) is a curative treatment for some hematologic malignancies. As the overall number of survivors continues to increase, studies systematically examining outcomes in long-term survivors are needed. We studied the clinical and quality-of-life outcomes in HSCT recipients surviving 5 or more years from HSCT. Since 1993, 262 patients with hematologic malignancies received a T cell-depleted myeloablative HSCT from an HLA-identical sibling at a single center. Ninety-two survived beyond 5 years from HSCT (median follow-up 9.4 years, range: 5.1-15.3). Median age at transplantation was 35 years (range: 10-56). Twenty-two (24%) received a bone marrow transplant, and 70 (76%) received a peripheral blood HSCT. Of the 92 survivors, 60 completed quality-of-life measures. The main outcomes examined were chronic graft-versus-host-disease, disease relapse, survival, health-related quality-of-life (HRQL) (Functional Assessment of Cancer Therapy-General), physical and mental health (SF-36), and symptom experience (Rotterdam Symptom Checklist). Seventy-five (82%) of 92 survivors no longer required systemic immunosuppressive treatment. Four (4.3%) relapsed with leukemia at a median of 8.5 years (range: 6.2-14.0) after HSCT. Four (4.3%) died between 7.4 and 13.4 years post-HSCT (1 relapse, 1 lung cancer, 1 pneumonia, 1 brain hemorrhage). Most survivors beyond 5 years had an excellent performance status with no difference in physical and mental health and higher HRQL scores (P = .02) compared with population norms. Although physical and psychologic symptom distress was low, those with higher symptom distress experienced inferior HRQL. These results show that 5 or more years after T cell-depleted HSCT for hematologic malignancy most individuals survive disease free with an excellent performance status, preserved physical and psychological health, and excellent HRQL." [2]
References:
[1] "Sergio Giralt: Allogeneic Transplant Remains Justified for High-Risk Multiple Myeloma Patients", Oncology Times, Dec 2011 (full text of article)
[2] RQ Lee, "Favorable outcomes in patients surviving 5 or more years after allogeneic hematopoietic stem cell transplantation for hematologic malignancies," Biology of Blood and Marrow Transplantation, Aug 2010 (full text of article)
Thelimeusa summed it up perfectly:
We also wanted an allo, but the transplant doctor didn't want to give it to her because he has bad results with allo on refractory / relapsed patients and it's not worth the risks.
Allos should really be looked at as consolidation and maintenance of first remission. There was an interview with Robin Roberts' transplant doctor from back in 2011 that I think summed up perfectly who should be looking to do an allo transplant.
"Oncologists frequently see multiple myeloma patients in their practice who have achieved a stringent complete response (CR) after receiving several cycles of combination therapy, such as bortezomib plus thalidomide plus dexamethasone, followed by an autologous SCT. “These patients ask, ‘Can I be cured? What is my life expectancy? Will my disease come back?’” Dr. Giralt said in his presentation at the meeting. “There is a chance these patients will be cured, but more likely the disease will come back and will be more difficult to control due to clonal evolution, and will be more difficult to control with chemotherapy.”
The question for these patients is “would replacement of their bone marrow with the bone marrow and immune system of someone else be able to achieve long-term disease control? That is, can I do SCT and exploit the graft-versus-myeloma [GvM] effect that will prevent the disease from coming back. Is the risk of the procedure worth the benefit?”"
"In summary, Dr. Giralt said, “current results with both autologous and allogeneic SCT justify the following patterns of care: in standard practice allogeneic SCT can be offered to patients with high-risk disease, or younger patients with standard risk disease who are highly motivated and well-informed. Allogeneic SCT as consolidation of a first remission should preferentially be performed under the auspices of a clinical trial. Autologous SCT remains the most reasonable consolidative therapy for myeloma patients today.” [1]
Allos are definitely not a good "therapy of last resort" or "one shot miracle cure".
The one point I would make that never comes up in these discussions with patients that never did allo transplants are how great a patients quality of life can be after doing one. I did partially t cell depleted allo and this study was very influential in making it an easy decision for me to do the allo in first complete response. My experience with respect to quality of life is right in line with this study as I am just short of 5 years since my allo.
Allogeneic hematopoietic stem cell transplantation (HSCT) is a curative treatment for some hematologic malignancies. As the overall number of survivors continues to increase, studies systematically examining outcomes in long-term survivors are needed. We studied the clinical and quality-of-life outcomes in HSCT recipients surviving 5 or more years from HSCT. Since 1993, 262 patients with hematologic malignancies received a T cell-depleted myeloablative HSCT from an HLA-identical sibling at a single center. Ninety-two survived beyond 5 years from HSCT (median follow-up 9.4 years, range: 5.1-15.3). Median age at transplantation was 35 years (range: 10-56). Twenty-two (24%) received a bone marrow transplant, and 70 (76%) received a peripheral blood HSCT. Of the 92 survivors, 60 completed quality-of-life measures. The main outcomes examined were chronic graft-versus-host-disease, disease relapse, survival, health-related quality-of-life (HRQL) (Functional Assessment of Cancer Therapy-General), physical and mental health (SF-36), and symptom experience (Rotterdam Symptom Checklist). Seventy-five (82%) of 92 survivors no longer required systemic immunosuppressive treatment. Four (4.3%) relapsed with leukemia at a median of 8.5 years (range: 6.2-14.0) after HSCT. Four (4.3%) died between 7.4 and 13.4 years post-HSCT (1 relapse, 1 lung cancer, 1 pneumonia, 1 brain hemorrhage). Most survivors beyond 5 years had an excellent performance status with no difference in physical and mental health and higher HRQL scores (P = .02) compared with population norms. Although physical and psychologic symptom distress was low, those with higher symptom distress experienced inferior HRQL. These results show that 5 or more years after T cell-depleted HSCT for hematologic malignancy most individuals survive disease free with an excellent performance status, preserved physical and psychological health, and excellent HRQL." [2]
References:
[1] "Sergio Giralt: Allogeneic Transplant Remains Justified for High-Risk Multiple Myeloma Patients", Oncology Times, Dec 2011 (full text of article)
[2] RQ Lee, "Favorable outcomes in patients surviving 5 or more years after allogeneic hematopoietic stem cell transplantation for hematologic malignancies," Biology of Blood and Marrow Transplantation, Aug 2010 (full text of article)
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Mark11
Re: Decision time: allogeneic (donor) stem cell transplant
I had a haplo (half match) allo transplant to treat the leukemia that came along as a result of my auto transplant. Thankfully the AML (acute myeloid leukemia) is in remission. My myeloma stayed in remission for about two + years before it started progressing again. The allo was non-myeloablative (low impact) and was much more tolerable than the auto. The graft versus host disease (GVHD) is more problematic and for me lasted two and a half years, but was also manageable.
Any therapy is a difficult decision, but thankfully there are many possibilities at this point. Best of luck dealing with all of this! There are no easy answers.
Any therapy is a difficult decision, but thankfully there are many possibilities at this point. Best of luck dealing with all of this! There are no easy answers.
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