Hello Andrew,
Mine was done at Seattle Cancer Care Alliance. It's part of the Fred Hutchinson Cancer Research Center. I couldn't be happier with everything I've ever had done there. From the docs to the nurses to the janitorial staff, everybody there has been flat out top notch.
Eric T
Forums
-
Eric T - Name: Eric T
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June, 2009
- Age at diagnosis: 46
Re: Allo transplantation - what are your thoughts?
Hello Eric,
Thank you for your informative reply. Never apologize for your post being long, as it was worth the read.
I was wondering if you too may indulge my curiosity by answering a few questions relating to your personal experience. Again if not, that's ok.
1. Were you classed as being "high risk"?
2. Was it always the plan to do tandem auto then allo? Or was the allo decided due to the results of the auto?
3. If it was always the plan, did you reach CR after auto? If not, was that not the goal of the auto in any case?
Again, thanks for sharing. And long may your results be good.
Yours, Vicki
Thank you for your informative reply. Never apologize for your post being long, as it was worth the read.
I was wondering if you too may indulge my curiosity by answering a few questions relating to your personal experience. Again if not, that's ok.
1. Were you classed as being "high risk"?
2. Was it always the plan to do tandem auto then allo? Or was the allo decided due to the results of the auto?
3. If it was always the plan, did you reach CR after auto? If not, was that not the goal of the auto in any case?
Again, thanks for sharing. And long may your results be good.
Yours, Vicki
-
vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Allo transplantation - what are your thoughts?
Hello,
I decided to do an allo transplant upfront in my first treatment cycle. Reason for my decision was: I wanted to try for the longest drug free remission possible (I understood the risk that if I got chronic GvHD [graft versus host disease], I would be on a lot of drugs for that); I wanted to give myself the chance of cure, and try for it.
Weighing up the risks with the potential benefits, I decided to go for it. As I was a relatively young multiple myeloma patient, I thought that I would be doing an allo at some point, so I decided to do it early, when it had the best chance of success and, being otherwise fit and well, I had the best chance of a good outcome (i.e., less likely to get acute GvHD, survive the treatment, and for it to be effective against the multiple myeloma).
I also agree with Eric T's earlier point -- I thought an upfront tandem auto / allo was the best current treatment option that to give me a chance of surviving, and surviving well, for 10 years. In 10 years time, hopefully we will be close to multiple myeloma being a chronic / treatable disease. And that's if the allo doesn't cure me.
My induction therapy was CTD [cyclophosphamide, thalidomide, and dex]. 11 cycles got my paraproteins down from 98 to 2 g/dL (or 9.8 to 0.2 g/dL). I then had an auto SCT, after which there was only a trace level of PP's.
4 months after the auto SCT, I had a RIC [reduced intensity conditioning] allo, with ATG depleted T cells. This was part of a trial. The trial is a phase 2 study, where lenalidomide [Revlimid] is given at a low dose (10 mg) for 12 months, and they are testing if this will reduce relapse rates for allos.
Chimerism has been 100% donor since about day 60, and has stayed at that level.
I'm at day +130 post allo, and so far so good. Paraproteins have gone, and I'm due for a BMB next month. I had no acute GvHD, and other than having a high temp reaction to the ATG on the first day, the allo was a breeze compared to the auto SCT.
At about day +90 I had a skin rash on my face and the tops of my feet. This was treated with steroids and stopping the lenalidomide. I'm off steroids now, waiting to see if rash will come back. If not, I will restart the lenalidomide.
Doing an allo is a tough decision, and I thought long and hard about it and read what studies I could find. But when my doctors presented the trial option to me, I knew I wanted to do it. It's too early to say my allo has been a success, but whatever happens, I know I made the best decision I could at the time for myself. And I'm very happy how things have gone so far.
Laura
I decided to do an allo transplant upfront in my first treatment cycle. Reason for my decision was: I wanted to try for the longest drug free remission possible (I understood the risk that if I got chronic GvHD [graft versus host disease], I would be on a lot of drugs for that); I wanted to give myself the chance of cure, and try for it.
Weighing up the risks with the potential benefits, I decided to go for it. As I was a relatively young multiple myeloma patient, I thought that I would be doing an allo at some point, so I decided to do it early, when it had the best chance of success and, being otherwise fit and well, I had the best chance of a good outcome (i.e., less likely to get acute GvHD, survive the treatment, and for it to be effective against the multiple myeloma).
I also agree with Eric T's earlier point -- I thought an upfront tandem auto / allo was the best current treatment option that to give me a chance of surviving, and surviving well, for 10 years. In 10 years time, hopefully we will be close to multiple myeloma being a chronic / treatable disease. And that's if the allo doesn't cure me.
My induction therapy was CTD [cyclophosphamide, thalidomide, and dex]. 11 cycles got my paraproteins down from 98 to 2 g/dL (or 9.8 to 0.2 g/dL). I then had an auto SCT, after which there was only a trace level of PP's.
4 months after the auto SCT, I had a RIC [reduced intensity conditioning] allo, with ATG depleted T cells. This was part of a trial. The trial is a phase 2 study, where lenalidomide [Revlimid] is given at a low dose (10 mg) for 12 months, and they are testing if this will reduce relapse rates for allos.
Chimerism has been 100% donor since about day 60, and has stayed at that level.
I'm at day +130 post allo, and so far so good. Paraproteins have gone, and I'm due for a BMB next month. I had no acute GvHD, and other than having a high temp reaction to the ATG on the first day, the allo was a breeze compared to the auto SCT.
At about day +90 I had a skin rash on my face and the tops of my feet. This was treated with steroids and stopping the lenalidomide. I'm off steroids now, waiting to see if rash will come back. If not, I will restart the lenalidomide.
Doing an allo is a tough decision, and I thought long and hard about it and read what studies I could find. But when my doctors presented the trial option to me, I knew I wanted to do it. It's too early to say my allo has been a success, but whatever happens, I know I made the best decision I could at the time for myself. And I'm very happy how things have gone so far.
Laura
-
LauraScot - Name: Laura
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2013
- Age at diagnosis: 47
Re: Allo transplantation - what are your thoughts?
Hello Vic,
As far as whether I was "high risk", I would have to say no. I have no chromosomal deletions or translocations, etc that would qualify me as high risk. I had relapsed from my first auto, and the Revlimid / dexamethasone / HDAC inhibitor trial I was on was no longer completely effective. So in my own mind, I decided that I really needed to find a new direction to go. I was aware of several of the new novel drugs and trials going on, and if I did not find a matched donor, had a pretty good idea of what direction I wanted to go.
The allogeneic trial I was most interested in, and the one I ended up being a part of, is designed as a tandem auto / allo. I had actually been following this particular trial and some of the science behind it for a year to a year and a half, and believed – at least through my eyes – that the science was sound and made sense.
I did achieve CR after the induction auto, but to be honest never once considered the idea of not following it up with the allo. The auto was designed as an induction therapy, and was very successful as far as knocking the cancer down to a manageable level for the allo to have the greatest chance of success. I had decided pretty early on that, once I started down the path I had chosen, I would go through with it, as I firmly believed it gave me the best chance of a long term remission.
Hope this helps, and feel free to ask me most anything. If its for me too personal for this site, I am happy to email or chat with you personally. Just private message me and we can set something up.
Thanks for the kind thoughts,
Eric
As far as whether I was "high risk", I would have to say no. I have no chromosomal deletions or translocations, etc that would qualify me as high risk. I had relapsed from my first auto, and the Revlimid / dexamethasone / HDAC inhibitor trial I was on was no longer completely effective. So in my own mind, I decided that I really needed to find a new direction to go. I was aware of several of the new novel drugs and trials going on, and if I did not find a matched donor, had a pretty good idea of what direction I wanted to go.
The allogeneic trial I was most interested in, and the one I ended up being a part of, is designed as a tandem auto / allo. I had actually been following this particular trial and some of the science behind it for a year to a year and a half, and believed – at least through my eyes – that the science was sound and made sense.
I did achieve CR after the induction auto, but to be honest never once considered the idea of not following it up with the allo. The auto was designed as an induction therapy, and was very successful as far as knocking the cancer down to a manageable level for the allo to have the greatest chance of success. I had decided pretty early on that, once I started down the path I had chosen, I would go through with it, as I firmly believed it gave me the best chance of a long term remission.
Hope this helps, and feel free to ask me most anything. If its for me too personal for this site, I am happy to email or chat with you personally. Just private message me and we can set something up.
Thanks for the kind thoughts,
Eric
-
Eric T - Name: Eric T
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June, 2009
- Age at diagnosis: 46
Re: Allo transplantation - what are your thoughts?
Hi Vicki,
I had an allogeneic transplant two years ago in Sweden. It was a very difficult decision. What made it easier was that I was only 48 years old when diagnosed, I had high-risk disease, I only reached VGPR after my auto, I had tried thalidomide and it didn´t work, so I was afraid Revlimid wouldn’t work later on and my treatment options would be limited.
It was I who brought up the allo transplant question to my doctor. His first reaction was "over my dead body". We did ,however, test my one and only sister and she was a match. The doctor at the allo transplant center thought it was reasonable to do an allo, but it was up to me to decide. He gave me the statistics for that particular transplant center and TRM [treatment-related mortality] at one year would be about 7%.
I knew that you get best results if you do an allo in first "CR", as Mark and others have pointed out. Unfortunately, I relapsed while on Velcade maintenance while I was waiting for my allo. I did not reach CR after the allo transplant, but my already low numbers went even lower. They were not stable though, and drifted upwards. I received three DLI (donor lymphocyte infusions) that did have an effect, but short-lived.
So, 10 months after my allo, I started Revlimid maintenance. Started with 5 mg, then 10 mg, and got severe leg pains (could be some kind of GVHD in the connective tissue). Added prednisone and got better. Had another DLI and also added some weekly betamethasone. That made my SFLC ratio become normal and I had my first negative immunofixation. I seem to be just on the limit because sometimes the immunofixation is negative and sometimes positive.
I´ve had pain in my hips, legs and lower back and this spring we found out that I have osteoarthritis (correct term?) in my hips as well as osteonecrosis in my femur heads. This could be due to the allo transplant or too much corticosteroids. I´ve just had a hip replacement of one hip and will probably have the other one replaced in November.
I have tried 15 and 25 mg Revlimid also and, when I´m on 25 mg, I get this burning sensation in my legs that I think is some kind of GVHD. If that is what keeps me alive, I´m willing to endure it!
Sorry for this long post!
Mark, good to hear your doing fine. You were an inspiration to me before my transplant!
Best wishes to you Vicki!
I had an allogeneic transplant two years ago in Sweden. It was a very difficult decision. What made it easier was that I was only 48 years old when diagnosed, I had high-risk disease, I only reached VGPR after my auto, I had tried thalidomide and it didn´t work, so I was afraid Revlimid wouldn’t work later on and my treatment options would be limited.
It was I who brought up the allo transplant question to my doctor. His first reaction was "over my dead body". We did ,however, test my one and only sister and she was a match. The doctor at the allo transplant center thought it was reasonable to do an allo, but it was up to me to decide. He gave me the statistics for that particular transplant center and TRM [treatment-related mortality] at one year would be about 7%.
I knew that you get best results if you do an allo in first "CR", as Mark and others have pointed out. Unfortunately, I relapsed while on Velcade maintenance while I was waiting for my allo. I did not reach CR after the allo transplant, but my already low numbers went even lower. They were not stable though, and drifted upwards. I received three DLI (donor lymphocyte infusions) that did have an effect, but short-lived.
So, 10 months after my allo, I started Revlimid maintenance. Started with 5 mg, then 10 mg, and got severe leg pains (could be some kind of GVHD in the connective tissue). Added prednisone and got better. Had another DLI and also added some weekly betamethasone. That made my SFLC ratio become normal and I had my first negative immunofixation. I seem to be just on the limit because sometimes the immunofixation is negative and sometimes positive.
I´ve had pain in my hips, legs and lower back and this spring we found out that I have osteoarthritis (correct term?) in my hips as well as osteonecrosis in my femur heads. This could be due to the allo transplant or too much corticosteroids. I´ve just had a hip replacement of one hip and will probably have the other one replaced in November.
I have tried 15 and 25 mg Revlimid also and, when I´m on 25 mg, I get this burning sensation in my legs that I think is some kind of GVHD. If that is what keeps me alive, I´m willing to endure it!
Sorry for this long post!
Mark, good to hear your doing fine. You were an inspiration to me before my transplant!
Best wishes to you Vicki!
-
asaryden - Name: asaryden
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2010
- Age at diagnosis: 48
Re: Allo transplantation - what are your thoughts?
Thank you Laura, Eric again, and Asaryden.
Your posts are helping very much.
Cheers, Vicki
Your posts are helping very much.
Cheers, Vicki
-
vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Allo transplantation - what are your thoughts?
I am 55 and will soon have my first stem cell transplant, as my smoldering myeloma is now grumbling. I don't think the odds of an allo are good enough for me to risk it, even though I am young (for this disease) and relatively healthy.
I put it this way, if I had the same odds of winning the lottery (1 in 4), I'd seriously consider selling the house and gambling it. My haemotologist explained to me that allos, due to their high mortality rate and the associated problems, are considered an experimental procedure.
It does appear that an allo is the only thing close to a 'cure'. However, the associated risks are debilitating and possibly drastically life shortening.
I think with this disease, we must look at quality of life versus quantity. I explained to my children that, when I am ill enough, I will want to die, as the pain etc will simply be too much to want to continue to live.
For me, an allo simply has too many risks to warrant doing it over an auto, which we know will more than likely work and give me a normal life for a few years.
I put it this way, if I had the same odds of winning the lottery (1 in 4), I'd seriously consider selling the house and gambling it. My haemotologist explained to me that allos, due to their high mortality rate and the associated problems, are considered an experimental procedure.
It does appear that an allo is the only thing close to a 'cure'. However, the associated risks are debilitating and possibly drastically life shortening.
I think with this disease, we must look at quality of life versus quantity. I explained to my children that, when I am ill enough, I will want to die, as the pain etc will simply be too much to want to continue to live.
For me, an allo simply has too many risks to warrant doing it over an auto, which we know will more than likely work and give me a normal life for a few years.
-
Salzmav - Name: Salzmav
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 52
Re: Allo transplantation - what are your thoughts?
Hi Asaryden,
It is great to see you post. I am always checking to see if you post. Hang in there. You are fortunate to have such a great transplant center. Judging by what myeloma patients are quoted for non relapse mortality, many of our centers here in the US are not nearly as skilled with allos as your center is.
Positive vibes being sent your way!
Mark
It is great to see you post. I am always checking to see if you post. Hang in there. You are fortunate to have such a great transplant center. Judging by what myeloma patients are quoted for non relapse mortality, many of our centers here in the US are not nearly as skilled with allos as your center is.
Positive vibes being sent your way!
Mark
-
Mark11
Re: Allo transplantation - what are your thoughts?
Hi Laura,
You wrote:
Do you have to go back on Revlimid? One of the main reasons I did the upfront allo was so I could stop putting the toxins in my body. I can see a relapsed patient using some type of maintenance after an allo but I am not so sure patients using it to consolidate first CR need it . The allo studies done on myeloma to date are usually done on patients not CR, so IMO that explains the relapses. I was not part of a clinical trial so I was free to make any decision I was comfortable with.
Good luck. Hopefully you will soon be saying the same thing I do about doing an allo in first CR. It was one of the best decisions I ever made.
Mark
You wrote:
4 months after the auto SCT, I had a RIC [reduced intensity conditioning] allo, with ATG depleted T cells. This was part of a trial. The trial is a phase 2 study, where lenalidomide [Revlimid] is given at a low dose (10 mg) for 12 months, and they are testing if this will reduce relapse rates for allos.
Chimerism has been 100% donor since about day 60, and has stayed at that level.
I'm at day +130 post allo, and so far so good. Paraproteins have gone, and I'm due for a BMB next month. I had no acute GvHD, and other than having a high temp reaction to the ATG on the first day, the allo was a breeze compared to the auto SCT."
Do you have to go back on Revlimid? One of the main reasons I did the upfront allo was so I could stop putting the toxins in my body. I can see a relapsed patient using some type of maintenance after an allo but I am not so sure patients using it to consolidate first CR need it . The allo studies done on myeloma to date are usually done on patients not CR, so IMO that explains the relapses. I was not part of a clinical trial so I was free to make any decision I was comfortable with.
Good luck. Hopefully you will soon be saying the same thing I do about doing an allo in first CR. It was one of the best decisions I ever made.
Mark
-
Mark11
Re: Allo transplantation - what are your thoughts?
Mark - Where did you have your treatment done?? Thanks!
-
katieg
50 posts
• Page 3 of 5 • 1, 2, 3, 4, 5
Return to Treatments & Side Effects