We are not at the point that treatment needs to be restarted, but I have began trying to research the efficacy of an allogeneic transplant at first relapse.
I can't find much on the topic, but it seems to me that if a deep response can be achieved prior to the transplant, it may be a very good option.
I know that Mark will weigh in on this topic with some valuable resources. Does anyone have any firsthand experience with this?
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Re: Allogeneic (donor) transplant at first relapse?
I know I'm pretty much in the same boat, as I'm in my first relapse, although it's a very very slow relapse. I could go months/years before I do an Allo, hoping I do not as I think I will lose my mind sitting home for 3-6 months.
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Guest1
Re: Allogeneic (donor) transplant at first relapse?
Hi Guest,
How long are you from diagnosis? How long has it been since the biochemical relapse began? What induction regimen did you undergo? Have you been able to find data on an allo at first relapse?
How long are you from diagnosis? How long has it been since the biochemical relapse began? What induction regimen did you undergo? Have you been able to find data on an allo at first relapse?
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Perseverance - When were you/they diagnosed?: 2010
Re: Allogeneic (donor) transplant at first relapse?
I was diagnosed in March 2010, underwent 4 cycles of VRD and has tandem auto transplants in Sept 2010 and March 2011. Ive havent been on any maintenance but being that Im 35 and extremely active and healthy, an allo has been suggested
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Guest1
Re: Allogeneic (donor) transplant at first relapse?
Guest,
Are you standard risk? What is the current status of your M-Spike? What is your doctor recommending?
Not getting much feedback on the allo at relapse.
Are you standard risk? What is the current status of your M-Spike? What is your doctor recommending?
Not getting much feedback on the allo at relapse.
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Perseverance - When were you/they diagnosed?: 2010
Re: Allogeneic (donor) transplant at first relapse?
Specialist I see in Denver uses Allo's as last resort given the significant risks and side effects of a allo transplant. They typically do two or three auto's before they even think about a allo. If you have a VGR to initial therapy then the auto should take you to a CR. Jerry.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Allogeneic (donor) transplant at first relapse?
Hi Perseverance,
I realise you are "trying to research the efficacy of an allogeneic transplant at first relapse." Unfortunately my allo was a last resort, put a lot of emphasis on last. I never achieved a remission, my myeloma was still active (it had been slowed down) and my paraprotein was 16 g/L. Normally with allos (at the hospital I had mine) they like the paraprotein level to be ~ 4 g/L (0.4g/dL). Professor Spencer, the head of the department, told me that the available chemotherapy agents would only delay the inevitable (prognosis was 18 months) & the result of the allo might be the same. Thankfully it wasn't & I am still here; it will be 3 years next April.
If you are trying to find reassurance from statistics you probably wont find it. For example I am still alive despite everything that I have been through & my chemoresistant myeloma (in your eye myeloma), the neutropenic colitis (caused by the melphalan - mortality rate of 40%) certainly put a spanner in the works. It knocked the stuffing out of me but I am in the 60% that survive it. Apparently only 20% of patients with chemoresistant myeloma have a favourable response to an allograft ( cant remember the paper that figure came from) and I think the stats were 10 - 20 % of patients that have had a failed autograft go on to have a positive response with their allograft. So statistically speaking there was a slim chance that I would work. Would I have made the decision to go ahead with the allo if I was told there was < 10% chance of survival?
I went ahead with the allo because I believed it had a better chance of working than the auto. I know that a lot of people who post on the Beacon have had a great response with their auto but I didn't. The other "thing" that favours the allo in my eyes is that I am a molecular biologist by profession. My last couple of projects I worked on (I completed my doctoral thesis on an aspect of one of the projects) was developing vaccines against internal & external parasites of sheep. I can see the similarity between my myeloma and those parasites. The parasites would evade the hosts immune system, the most common form of treatment is with chemical drenches but resistance develops (sound familiar). For me having an allo made sense. The specialists were concerned with the level of my paraprotein prior to transplant but my response was that it gave the donor cells a bigger target. I know it is not that simple but for whatever reason it worked.
One of the things that has intrigued me is when I was a chimera waiting to be completely donor I was two supposedly incompatible blood groups, A+ & B-. I was off my immunosuppressive drugs as the specialists were trying to stimulate some GVHD. In theory..........
Where does that leave you? You know an allo can work but there are risks. If I was doing it again I would probably try to minimise the risks & would want to know: if my specialist were up to date with the latest tests on monitoring GVHD; if my GP understands the seriousness of infections & how quickly they can develop (I think, and I cant support this, that a big killer after transplants is infection) ; that my friends & family understand the seriousness of infection (I asked my children's school to let me know if there were any outbreaks of disease -2 years ago there were a couple of cases of swine flu).
Why did my allo work when others haven't? Don't know. There are so many variables.
All the best for your journey,
Libby
I realise you are "trying to research the efficacy of an allogeneic transplant at first relapse." Unfortunately my allo was a last resort, put a lot of emphasis on last. I never achieved a remission, my myeloma was still active (it had been slowed down) and my paraprotein was 16 g/L. Normally with allos (at the hospital I had mine) they like the paraprotein level to be ~ 4 g/L (0.4g/dL). Professor Spencer, the head of the department, told me that the available chemotherapy agents would only delay the inevitable (prognosis was 18 months) & the result of the allo might be the same. Thankfully it wasn't & I am still here; it will be 3 years next April.
If you are trying to find reassurance from statistics you probably wont find it. For example I am still alive despite everything that I have been through & my chemoresistant myeloma (in your eye myeloma), the neutropenic colitis (caused by the melphalan - mortality rate of 40%) certainly put a spanner in the works. It knocked the stuffing out of me but I am in the 60% that survive it. Apparently only 20% of patients with chemoresistant myeloma have a favourable response to an allograft ( cant remember the paper that figure came from) and I think the stats were 10 - 20 % of patients that have had a failed autograft go on to have a positive response with their allograft. So statistically speaking there was a slim chance that I would work. Would I have made the decision to go ahead with the allo if I was told there was < 10% chance of survival?
I went ahead with the allo because I believed it had a better chance of working than the auto. I know that a lot of people who post on the Beacon have had a great response with their auto but I didn't. The other "thing" that favours the allo in my eyes is that I am a molecular biologist by profession. My last couple of projects I worked on (I completed my doctoral thesis on an aspect of one of the projects) was developing vaccines against internal & external parasites of sheep. I can see the similarity between my myeloma and those parasites. The parasites would evade the hosts immune system, the most common form of treatment is with chemical drenches but resistance develops (sound familiar). For me having an allo made sense. The specialists were concerned with the level of my paraprotein prior to transplant but my response was that it gave the donor cells a bigger target. I know it is not that simple but for whatever reason it worked.
One of the things that has intrigued me is when I was a chimera waiting to be completely donor I was two supposedly incompatible blood groups, A+ & B-. I was off my immunosuppressive drugs as the specialists were trying to stimulate some GVHD. In theory..........
Where does that leave you? You know an allo can work but there are risks. If I was doing it again I would probably try to minimise the risks & would want to know: if my specialist were up to date with the latest tests on monitoring GVHD; if my GP understands the seriousness of infections & how quickly they can develop (I think, and I cant support this, that a big killer after transplants is infection) ; that my friends & family understand the seriousness of infection (I asked my children's school to let me know if there were any outbreaks of disease -2 years ago there were a couple of cases of swine flu).
Why did my allo work when others haven't? Don't know. There are so many variables.
All the best for your journey,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Allogeneic (donor) transplant at first relapse?
My wife, 53, is being told Allo transplant is only option for her. This year her Myeloma became very aggressive with bone involvement in all parts of back, shoulders and femurs. Radiation and cyber knife in back, radiation shoulders and legs. She is having modified CVAD next week and if her numbers come down, non related Allo in Jan.
Kyprolis and Pom. Didn't help her at all.
I hope her odds are better than mentioned in previous post!
Kyprolis and Pom. Didn't help her at all.
I hope her odds are better than mentioned in previous post!
Re: Allogeneic (donor) transplant at first relapse?
REGARDING "Thelimeusa" My wife, 53, is being told Allo transplant is only option for her. This year her Myeloma became very aggressive with bone involvement in all parts of back, shoulders and femurs. Radiation and cyber knife in back, radiation shoulders and legs. She is having modified CVAD next week and if her numbers come down, non related Allo in Jan.
Kyprolis and Pom. Didn't help her at all"
So sorry to hear about this situation. I assume you also looked at the clinical trials of the several new drugs that are now being tested for refractory multiple myeloma patients? http://clinicaltrials.gov/ct2/results?term=myeloma+refractory&recr=Open Hope things work out well for your wife.
Kyprolis and Pom. Didn't help her at all"
So sorry to hear about this situation. I assume you also looked at the clinical trials of the several new drugs that are now being tested for refractory multiple myeloma patients? http://clinicaltrials.gov/ct2/results?term=myeloma+refractory&recr=Open Hope things work out well for your wife.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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