Hello,
I'm not new to the site but have not been on in a long while. My name is Gary and I was officially diagnosed with multiple myeloma in December 2013. Mine was only discovered after several broken bones, finally an MRI of my shoulder revealed numerous lesions and the discovery of multiple myeloma. I started some treatment but it was not until I broke some vertebrae in my back and my collar bone that I was admitted to the hospital where I remained for about a month.
Since that time, I've been on all the drugs they had to offer; Velcade, Revlimid, dex, carfilzomib (Kyprolis), pomalidomide (Pomalyst), panobinostat (Farydak) and others I may have missed. Additionally, I've had three clinical trials and an autologous stem cell transplant. All of which worked to sort of keep the disease at bay but none put me into remission.
My doctors are telling me that at some time in the future, all these meds will stop working the the disease will slowly get worst which is why they are recommending an allogeneic (donor) stem cell transplant, thus the decision time. Frankly, I would not hesitate at all if it were not for the percentages they are telling me; 30-40% reasonable success, 40% no real change and 20% terrible results, it's the 20% I'm concerned about.
I'm looking to hear from those out there who may be in similar situation and are about to go through this or already have gone through it. I'm also awaiting a second opinion to see if both sources are steering me in the same direction.
Look forward to hearing from you
Thank you and be well
Gary
Forums
Re: Decision time: allogeneic (donor) stem cell transplant
Hi Gary,
Given what you have written, I would be very hesitant to do an allo transplant if I was in your position. It has been shown in studies starting in the late 1970's that allo transplants perform best as consolidation/maintenance of first complete response. They rarely work as "therapy of last resort". There was a large retrospective study comparing auto and allo RIC on patients that had relapsed off a previous auto and the auto group did better. There were some limitations to the study, but the auto group fared better.
Source: CO Freytes et al, "Second transplants for multiple myeloma relapsing after a previous autotransplant—reduced-intensity allogeneic vs autologous transplantation," Bone Marrow Transplantation, Nov 2013 (full text of article)
The two best studies I have seen with regard to relapsed myeloma patients are, first, the one discussed in this forum thread:
"Results of allo transplant study at John Theurer Center" (disc. started Oct 23, 2014)
and, second, this one:
E Smith et al, "CD34-Selected Allogeneic Hematopoietic Stem Cell Transplantation for Patients with Relapsed, High-Risk Multiple Myeloma," Biology of Blood and Marrow Transplantation, Aug 29, 2015 (abstract)
If you are seriously considering doing an allo I would contact one of those centers as those numbers are far superior to any others I have seen on relapsed myeloma patients.
Best of luck moving forward.
Mark
Given what you have written, I would be very hesitant to do an allo transplant if I was in your position. It has been shown in studies starting in the late 1970's that allo transplants perform best as consolidation/maintenance of first complete response. They rarely work as "therapy of last resort". There was a large retrospective study comparing auto and allo RIC on patients that had relapsed off a previous auto and the auto group did better. There were some limitations to the study, but the auto group fared better.
NST/RIC recipients were younger (median age 53 vs 56 years; P<0.001) and had a shorter time to progression after their first autotransplant. Non-relapse mortality at 1-year post transplant was higher in the NST/RIC cohort, 13% (95% confidence interval (CI), 8–19) vs 2% (95% CI, 1–5, Pless than or equal to0.001). Three-year PFS and OS for the NST/RIC cohort were 6% (95% CI, 3–10%) and 20% (95% CI, 14–27%). Similar outcomes for the autotransplant cohort were 12% (95% CI, 7–19%, P=0.038) and 46% (95% CI, 37–55%, P=0.001). In multivariate analyses, risk of death was higher in NST/RIC recipients (hazard ratio (HR) 2.38 (95% CI, 1.79–3.16), P<0.001), those with Karnofsky performance score<90 (HR 1.96 (95% CI, 1.47–2.62), P<0.001) and transplant before 2004 (HR 1.77 (95% CI, 1.34–2.35) Pless than or equal to0.001). In conclusion, NST/RIC was associated with higher TRM and lower survival than an autotransplant. As disease status was not available for most allotransplant recipients, it is not possible to determine which type of transplant is superior after autotransplant failure.
Source: CO Freytes et al, "Second transplants for multiple myeloma relapsing after a previous autotransplant—reduced-intensity allogeneic vs autologous transplantation," Bone Marrow Transplantation, Nov 2013 (full text of article)
The two best studies I have seen with regard to relapsed myeloma patients are, first, the one discussed in this forum thread:
"Results of allo transplant study at John Theurer Center" (disc. started Oct 23, 2014)
and, second, this one:
E Smith et al, "CD34-Selected Allogeneic Hematopoietic Stem Cell Transplantation for Patients with Relapsed, High-Risk Multiple Myeloma," Biology of Blood and Marrow Transplantation, Aug 29, 2015 (abstract)
If you are seriously considering doing an allo I would contact one of those centers as those numbers are far superior to any others I have seen on relapsed myeloma patients.
Best of luck moving forward.
Mark
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Mark11
Re: Decision time: allogeneic (donor) stem cell transplant
I too had faced this decision, and ultimately decided to pursue an allo transplant. However, I don't have a match, and so I wait.
This was the most difficult decision I've ever made, by a long shot. The numbers are horrible, and we will never have enough information. There will always be unknowns, unfortunately.
The morbidity and mortality numbers are terrible. No one should ever have to make a decision like this.
However, there's one thought that I keep coming back to over and over again: when comparing the morbidity and mortality of allogeneic transplant, you are NOT comparing it with the morbidity and mortality of HEALTHY. You are comparing it with the morbidity and mortality of a lifetime of myeloma and chemotherapy. So, what's the morbidity and mortality of myeloma? What's the morbidity and mortality of ongoing chemo?
Changes things doesn't it?
This was the most difficult decision I've ever made, by a long shot. The numbers are horrible, and we will never have enough information. There will always be unknowns, unfortunately.
The morbidity and mortality numbers are terrible. No one should ever have to make a decision like this.
However, there's one thought that I keep coming back to over and over again: when comparing the morbidity and mortality of allogeneic transplant, you are NOT comparing it with the morbidity and mortality of HEALTHY. You are comparing it with the morbidity and mortality of a lifetime of myeloma and chemotherapy. So, what's the morbidity and mortality of myeloma? What's the morbidity and mortality of ongoing chemo?
Changes things doesn't it?
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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
Hi Gary,
I did an allo transplant in April of this year. It was a VERY tough decision but ultimately I decided it was my best shot at long term survival and hopefully not a shorter life with chemo constantly. I however, had mine two months after my auto and I was in VGPR when I had it. My donor was a 90% match as there was not a perfect match. Was it easy - no way. How am I doing now - I feel good. I am weaning off the rejection meds, I exercise daily and I rarely need a nap. I am living a pretty "normal" life. The GVHD window is three years. I am cautiously optimistic. There is a thread on this forum if you would like to read it about my journey. I can't tell you what to do, but as of now, I am glad that I went through it. I will be praying for you as I do all others on this awful journey
Cindy
I did an allo transplant in April of this year. It was a VERY tough decision but ultimately I decided it was my best shot at long term survival and hopefully not a shorter life with chemo constantly. I however, had mine two months after my auto and I was in VGPR when I had it. My donor was a 90% match as there was not a perfect match. Was it easy - no way. How am I doing now - I feel good. I am weaning off the rejection meds, I exercise daily and I rarely need a nap. I am living a pretty "normal" life. The GVHD window is three years. I am cautiously optimistic. There is a thread on this forum if you would like to read it about my journey. I can't tell you what to do, but as of now, I am glad that I went through it. I will be praying for you as I do all others on this awful journey
Cindy
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CindyBrown - Name: Cindy Brown
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/26/14
- Age at diagnosis: 48
Re: Decision time: allogeneic (donor) stem cell transplant
Hi Gary,
I don't have any insight or advice beyond what you've gotten from other folks. But I did want to wish you good luck with your decision and treatment, whatever you end up doing.
Hi Tracy J,
It's a shame that you're still waiting for an allo transplant match. How does that work? Do you get any updates pr reassurances that "people" (whoever they are) are still working to find a match for you? Good luck. I'm still thinking of you, and still thinking you should write that book you mentioned awhile back.
Hi Cindy,
Very glad to hear that you are doing well at this point after your allo transplant. Keep up the good work!
Mike
I don't have any insight or advice beyond what you've gotten from other folks. But I did want to wish you good luck with your decision and treatment, whatever you end up doing.
Hi Tracy J,
It's a shame that you're still waiting for an allo transplant match. How does that work? Do you get any updates pr reassurances that "people" (whoever they are) are still working to find a match for you? Good luck. I'm still thinking of you, and still thinking you should write that book you mentioned awhile back.
Hi Cindy,
Very glad to hear that you are doing well at this point after your allo transplant. Keep up the good work!
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Decision time: allogeneic (donor) stem cell transplant
Gary-
What a tough decision you have to make. One of the other things I would suggest is that you might look at the various trials with altered T-cells. I know that Penn has, or is, opening up a follow-up study to the initial one that was completed this summer. There are others around the country that you might look at, too. As far as I know all of them include people who are refractory to treatment. These trials may be way more than what you feel that you can wrap your head around, but take a look.
I am sending you the strength to make the right decision for you.
Tracy J-
There is another poster on this forum, "WeatherNurse", who has just started to post again who needed an allo transplant and a match couldn't be found. She had a cord transplant earlier in the year. She says that her recovery has been long and hard, but so far is successful. Just another thing to consider and possibly ask about.
All the best in finding a match,
Nancy in Phila
What a tough decision you have to make. One of the other things I would suggest is that you might look at the various trials with altered T-cells. I know that Penn has, or is, opening up a follow-up study to the initial one that was completed this summer. There are others around the country that you might look at, too. As far as I know all of them include people who are refractory to treatment. These trials may be way more than what you feel that you can wrap your head around, but take a look.
I am sending you the strength to make the right decision for you.
Tracy J-
There is another poster on this forum, "WeatherNurse", who has just started to post again who needed an allo transplant and a match couldn't be found. She had a cord transplant earlier in the year. She says that her recovery has been long and hard, but so far is successful. Just another thing to consider and possibly ask about.
All the best in finding a match,
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: Decision time: allogeneic (donor) stem cell transplant
Tracy-- I like your thinking. It sure makes sense to me.
I've run that same thinking by my doc at UCSF and he was not on board with an allo at earlier phases...his reasoning being that the chemistry is pretty good, so why take the risk. But like you said, if you do it earlier, it makes all the sense in the world those numbers would be better.
I've run that same thinking by my doc at UCSF and he was not on board with an allo at earlier phases...his reasoning being that the chemistry is pretty good, so why take the risk. But like you said, if you do it earlier, it makes all the sense in the world those numbers would be better.
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Stann - Name: Stann
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 9/11/09
- Age at diagnosis: 46
Re: Decision time: allogeneic (donor) stem cell transplant
Good discussion. Having done an allo as part of upfront therapy I can tell you that my quality of life is excellent four and a half years after transplant. That is both physically and mentally, Not worrying about relapse is well worth the 29 days I spent in the hospital. Allos are definitely for younger, motivated patients that are concerned about the long term as opposed to the short term.
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Mark11
Re: Decision time: allogeneic (donor) stem cell transplant
Wow, thank you all for your replies and sorry for the long delay, I'm not on the site as often as I should be. Well, I'm headed to Dana-Farber in Boston this weekend for a second opinion about the allo stem cell transplant. I am totally comfortable with the people I am with now but said to myself from the beginning, "if anything really serious came up I want a second opinion" and this is certainly serious enough.
In the meantime,Johnson & Johnson introduced the new drug, Darzalex, which my current doctors are excited about, but don't know if I have enough time to wait for it to finally reach the end users? I'm anxious to see what the people at Dana-Farber have to say about the stem cell transplant as well as this new drug.
Lately, I've been experiencing lots of chest pain, back pain, side pain and basically pain all over the chest cavity. Originally thought it was related to a fall about a month ago, but have ruled that out and my doctor thinks it's myeloma causing the pain. Any one else experience this? Due to this pain my doctor wants me to go to the hospital for VDT-PACE five-day in-hospital treatment. So may things going through my head right now, yikes!!
I'll report back about my visit to Boston if not sooner.
Happy Thanksgiving to you all and thanks
Gary
In the meantime,Johnson & Johnson introduced the new drug, Darzalex, which my current doctors are excited about, but don't know if I have enough time to wait for it to finally reach the end users? I'm anxious to see what the people at Dana-Farber have to say about the stem cell transplant as well as this new drug.
Lately, I've been experiencing lots of chest pain, back pain, side pain and basically pain all over the chest cavity. Originally thought it was related to a fall about a month ago, but have ruled that out and my doctor thinks it's myeloma causing the pain. Any one else experience this? Due to this pain my doctor wants me to go to the hospital for VDT-PACE five-day in-hospital treatment. So may things going through my head right now, yikes!!
I'll report back about my visit to Boston if not sooner.
Happy Thanksgiving to you all and thanks
Gary
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weatley - Name: gary vlahov
- When were you/they diagnosed?: november 2013
- Age at diagnosis: 61
Re: Decision time: allogeneic (donor) stem cell transplant
Hello Weatley
You have been given information by relevant posters on the subject of Allos, so I will not interfere.
I want to just add that treating this disease and going through all available treatments is quite a feat. It is unfortunate to end up in pain at the end. I think you have a positive attitude which is good. It is good you are comfortable with your treating doctors even if you seek second opinion.
Although I have not gone through 'every possible' treatment, and am unlikely to, am aware treatment options are limited whilst we wait for new developments in the pipeline. With such an unpredictable disease for each person we are faced with difficult decisions. I wish you the best with yours.
You have been given information by relevant posters on the subject of Allos, so I will not interfere.
I want to just add that treating this disease and going through all available treatments is quite a feat. It is unfortunate to end up in pain at the end. I think you have a positive attitude which is good. It is good you are comfortable with your treating doctors even if you seek second opinion.
Although I have not gone through 'every possible' treatment, and am unlikely to, am aware treatment options are limited whilst we wait for new developments in the pipeline. With such an unpredictable disease for each person we are faced with difficult decisions. I wish you the best with yours.
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