Hello all,
Does anyone know what sort of time frame it is for a second stem cell transplant [SCT] if the first fails? I'm sure there are people on this forum that have had double autologous SCTs.
I also was wondering how successful the second transplant was/is.
Thanks Vicki.
Forums
-
vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: How long between your first & second transplant?
Hello,
Tandem transplants are usually done within 6 months of each other, with various other treatment(s) between them, as well as time for recovery.
Tandem transplants are usually done within 6 months of each other, with various other treatment(s) between them, as well as time for recovery.
-
dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: How long between your first & second transplant?
Hi Vicki,
I had my first ASCT in July 2010. I relapsed in Nov. 2012 and had my second ASCT July 2013.
I had my last bone marrow biopsy (July 2014) during one of my follow ups and results shows myeloma <5%. .We're going to wait until my next followup in November to see how the numbers are.
So for me it appears I had CR for just about a year and not too sure what the next steps are as we'll determine those in November dependent on the test in November.
Unfortunately for me I became a non-secretor sometime during my 2 year remission after my first ASCT so that is why when I relapsed in 2012 I was at 90% multiple myeloma vs 70% upon initial diagnosis.
Wishing you all the best, Marian Glenview IL
I had my first ASCT in July 2010. I relapsed in Nov. 2012 and had my second ASCT July 2013.
I had my last bone marrow biopsy (July 2014) during one of my follow ups and results shows myeloma <5%. .We're going to wait until my next followup in November to see how the numbers are.
So for me it appears I had CR for just about a year and not too sure what the next steps are as we'll determine those in November dependent on the test in November.
Unfortunately for me I became a non-secretor sometime during my 2 year remission after my first ASCT so that is why when I relapsed in 2012 I was at 90% multiple myeloma vs 70% upon initial diagnosis.
Wishing you all the best, Marian Glenview IL
-
MarianC
Re: How long between your first & second transplant?
Thanks Alex & Marian for your replies.
Since asking the question I have seen my doctor and he confirmed that my SCT has in fact failed. I now wait for the next move.
He has elected to do nothing for two months and then decide depending on my next lot of bloods what to do or not next.
Whilst he didn't commit to anything, he suggested another auto SCT might be the path taken. Also said we would get my siblings checked for compatibility in case of an allo (donor) transplant. So really I am non the wiser.
All in all it was a very confusing visit. In one breath he told me my cancer appears aggressive and that I am high risk, then the next breath says you're not that bad because I have no CRAB indicators. (Which is Good).
Anyway
Vic
Since asking the question I have seen my doctor and he confirmed that my SCT has in fact failed. I now wait for the next move.
He has elected to do nothing for two months and then decide depending on my next lot of bloods what to do or not next.
Whilst he didn't commit to anything, he suggested another auto SCT might be the path taken. Also said we would get my siblings checked for compatibility in case of an allo (donor) transplant. So really I am non the wiser.
All in all it was a very confusing visit. In one breath he told me my cancer appears aggressive and that I am high risk, then the next breath says you're not that bad because I have no CRAB indicators. (Which is Good).
Anyway
Vic
-
vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: How long between your first & second transplant?
Hello,
Perhaps I don't quite understand things, but it really puzzles me why he would elect to repeat a procedure that didn't have much efficacy. Have you asked him his rationale for this? I could see that an allo might be an option, or some other treatment modality.
I'm sorry that the first auto didn't work, and best wishes in your next step.
Alex
Perhaps I don't quite understand things, but it really puzzles me why he would elect to repeat a procedure that didn't have much efficacy. Have you asked him his rationale for this? I could see that an allo might be an option, or some other treatment modality.
I'm sorry that the first auto didn't work, and best wishes in your next step.
Alex
-
dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: How long between your first & second transplant?
For what it's worth, I was thinking the same thing as Alex when I read this. Why repeat an auto SCT if it clearly failed in a fairly short amount of time (perhaps there very well might be good reasons with clinical data to back up those reasons)? In any case, I think I would be having serious discussions with a top multiple myeloma specialist about a well-thought-out drug-only approach. I'm not personally bought into transplants in general, but I likely would also be doing some investigating into an allo with a top allo specialist if I were in your shoes (sounds like you've begun this process already).
Good luck with all this.
Good luck with all this.
Last edited by Multibilly on Sun Aug 10, 2014 8:21 pm, edited 1 time in total.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: How long between your first & second transplant?
Can I ask when your first transplant was? Recent or a few years ago?
I am in a similar position, but my transplant was over 4 years ago. Started showing an M-spike few months back (see my related posting), my doctor told me at my last appointment that we were going to wait two months and see how fast it is progressing (watch and wait). Plan is likely another transplant.
In my case I would not exactly say it failed, because it has been 4 years since I did any treatment at all.
I am in a similar position, but my transplant was over 4 years ago. Started showing an M-spike few months back (see my related posting), my doctor told me at my last appointment that we were going to wait two months and see how fast it is progressing (watch and wait). Plan is likely another transplant.
In my case I would not exactly say it failed, because it has been 4 years since I did any treatment at all.
-
lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: How long between your first & second transplant?
Hi Lys,
Vic indicated elsewhere that she is right around the 100 day mark since the transplant. So, I think your situation is a little different. From what you wrote, it seems that the transplant and related treatments pushed you to a complete remission status, and it's only after 4 years that you are now beginning to show relapse. In this case, it might be reasonable to do another transplant, but it might also be very reasonable to consider some non-transplant pathway.
Best wishes,
Alex
Vic indicated elsewhere that she is right around the 100 day mark since the transplant. So, I think your situation is a little different. From what you wrote, it seems that the transplant and related treatments pushed you to a complete remission status, and it's only after 4 years that you are now beginning to show relapse. In this case, it might be reasonable to do another transplant, but it might also be very reasonable to consider some non-transplant pathway.
Best wishes,
Alex
Last edited by dnalex on Mon Aug 11, 2014 1:20 am, edited 1 time in total.
-
dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: How long between your first & second transplant?
Hi Vicstir,
It is a s#@%* situation you find yourself in. Other people reading this discussion need to know that Vicstir is being treated in Australia (and I assume being treated through Medicare and the PBS). There are constraints on what you can be treated with and when you can be treated with it.
My auto was 4 years ago and things may have changed. However, when my auto failed I had to wait a certain length of time after the auto before I could go on to another chemo agent (at the time that was Velcade). It also had to be 9 months since using thalidomide and the response, as determined by a % change in the paraprotein [M-spike], had to be a certain value. While on Velcade, my paraprotein had to decrease by more than 50% to continue to be able to get it. Basically, my view of the situation is, if the drug doesn't work the PBS won't pay for another treatment cycle.
I am unsure whether they would give you another auto. In my case, to access more treatment on the PBS it needed to be seen that my myeloma was actively growing and it had to be 9 months after thalidomide treatment. I am unsure whether this is the situation for you, but I wouldn't be surprised - hence the 2 month wait.
Your oncologist may need to refer you to a myeloma consultant who specialises in allogeneic transplants. They may exhaust all treatment options by putting you on chemo agents that are currently available on the PBS before you have an allo. Or they may give you the option of having an allo as soon as possible.
What is your current paraprotein level? How quickly is it increasing? When I went in for my auto, my paraprotein was 24 g/L [2.4 g/dL] and when I had my allo it was 16 g/L [1.6 g/dL].
I will PM you my phone number.
Take care,
Libby
It is a s#@%* situation you find yourself in. Other people reading this discussion need to know that Vicstir is being treated in Australia (and I assume being treated through Medicare and the PBS). There are constraints on what you can be treated with and when you can be treated with it.
My auto was 4 years ago and things may have changed. However, when my auto failed I had to wait a certain length of time after the auto before I could go on to another chemo agent (at the time that was Velcade). It also had to be 9 months since using thalidomide and the response, as determined by a % change in the paraprotein [M-spike], had to be a certain value. While on Velcade, my paraprotein had to decrease by more than 50% to continue to be able to get it. Basically, my view of the situation is, if the drug doesn't work the PBS won't pay for another treatment cycle.
I am unsure whether they would give you another auto. In my case, to access more treatment on the PBS it needed to be seen that my myeloma was actively growing and it had to be 9 months after thalidomide treatment. I am unsure whether this is the situation for you, but I wouldn't be surprised - hence the 2 month wait.
Your oncologist may need to refer you to a myeloma consultant who specialises in allogeneic transplants. They may exhaust all treatment options by putting you on chemo agents that are currently available on the PBS before you have an allo. Or they may give you the option of having an allo as soon as possible.
What is your current paraprotein level? How quickly is it increasing? When I went in for my auto, my paraprotein was 24 g/L [2.4 g/dL] and when I had my allo it was 16 g/L [1.6 g/dL].
I will PM you my phone number.
Take care,
Libby
-
LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: How long between your first & second transplant?
Hi Vicky,
I can relate to your story. I was diagnosed September 2013. I am also in Australia.
Had the VCD regime and auto transplant at the beginning of May, my protein before transplant was 6g/l [0.6 g/dL]. After transplant, only can down to 5 [0.5 g/dL]. So I consider my transplant a bit of a fizzer. My oncologist started me on 100mg thalidomide daily six weeks after transplant. Numbers stayed the same for the last blood test. I have my 100 day bone marrow biopsy this week, so will see what that shows.
I have recovered well from the transplant and feel fine. That is the main thing.
Are they going to start you on maintenance? Apparently in Australia, you have to fail on thalidomide before they can use Revlimid. Oncologist has hinted on second transplant, quoting a British study where second transplants were often very successful.
All the best,
Eric
I can relate to your story. I was diagnosed September 2013. I am also in Australia.
Had the VCD regime and auto transplant at the beginning of May, my protein before transplant was 6g/l [0.6 g/dL]. After transplant, only can down to 5 [0.5 g/dL]. So I consider my transplant a bit of a fizzer. My oncologist started me on 100mg thalidomide daily six weeks after transplant. Numbers stayed the same for the last blood test. I have my 100 day bone marrow biopsy this week, so will see what that shows.
I have recovered well from the transplant and feel fine. That is the main thing.
Are they going to start you on maintenance? Apparently in Australia, you have to fail on thalidomide before they can use Revlimid. Oncologist has hinted on second transplant, quoting a British study where second transplants were often very successful.
All the best,
Eric
-
Darby
18 posts
• Page 1 of 2 • 1, 2