Hi,
My sister has relapsed straight after transplant. She also relapsed as soon as her Velcade, thalidomide, and dexamethasone (VTD) stopped last year.
Anyone else had similar experiences?
Thanks
Forums
5 posts
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Claire - Name: Claire
- Who do you know with myeloma?: Sister
- When were you/they diagnosed?: April2015
- Age at diagnosis: 55
Re: Relapse immediately following stem cell transplant?
Hi Claire,
I'm very sorry to hear about your sister's situation. Looking at her treatment profile (VTD, ESHAP, HDT&SCT), I'm guessing she might be located in the UK? Knowing her location will help folks on this forum make some suggestions on possible next steps within the constraints of that country's medical system.
I don't know if I've ever seen posts that talk about her specific situation, where one immediately relapses after discontinuation of treatment and also immediately relapses after transplant. However, this survey can give you an idea of how long it took a sample of patients on this forum to relapse after their transplants:
https://myelomabeacon.org/forum/weekly-poll-relapse-after-stem-cell-transplant-2013-t2640.html
I'm very sorry to hear about your sister's situation. Looking at her treatment profile (VTD, ESHAP, HDT&SCT), I'm guessing she might be located in the UK? Knowing her location will help folks on this forum make some suggestions on possible next steps within the constraints of that country's medical system.
I don't know if I've ever seen posts that talk about her specific situation, where one immediately relapses after discontinuation of treatment and also immediately relapses after transplant. However, this survey can give you an idea of how long it took a sample of patients on this forum to relapse after their transplants:
https://myelomabeacon.org/forum/weekly-poll-relapse-after-stem-cell-transplant-2013-t2640.html
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Relapse immediately following stem cell transplant?
Hello Claire:
A quick relapse, as alluded to by Multibilly, is a cause of concern. I am sorry to hear about it in your case. Are you at a center with access to clinical trials to potentially get access to the best modern treatment (e.g., monoclonal antibodies). You may want to research where is the nearest location with the best possible multiple myeloma specialist and the best possible clinical trials. Even though not ideal, in this day and age, many patients seem to do very well with some of the newer treatments as a second line, even though some of the traditional treatments did not perform. Good luck to you.
A quick relapse, as alluded to by Multibilly, is a cause of concern. I am sorry to hear about it in your case. Are you at a center with access to clinical trials to potentially get access to the best modern treatment (e.g., monoclonal antibodies). You may want to research where is the nearest location with the best possible multiple myeloma specialist and the best possible clinical trials. Even though not ideal, in this day and age, many patients seem to do very well with some of the newer treatments as a second line, even though some of the traditional treatments did not perform. Good luck to you.
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JPC - Name: JPC
Re: Relapse immediately following stem cell transplant?
Hello Claire,
I have been posting on my stem cell transplant a similar case with myself. Before my stem cell transplant, my kappa free light chain level had decreased to 40 from over 1000 in February, and my plasma cell percentage from 70% to 20% plasma in April. I had my stem cell transplant in May and in the second week of June my kappa free light chain level had already increased to 112.
I am in the same condition and have the same questions as you have. My stem cell doctor tells me to wait until Day +100 to see the final results, but I do not want to wait and then be in a bad scenario. I am exploring immunotherapy or a allogeneic (donor) stem cell transplant if my body is able to handle another transplant.
AC
I have been posting on my stem cell transplant a similar case with myself. Before my stem cell transplant, my kappa free light chain level had decreased to 40 from over 1000 in February, and my plasma cell percentage from 70% to 20% plasma in April. I had my stem cell transplant in May and in the second week of June my kappa free light chain level had already increased to 112.
I am in the same condition and have the same questions as you have. My stem cell doctor tells me to wait until Day +100 to see the final results, but I do not want to wait and then be in a bad scenario. I am exploring immunotherapy or a allogeneic (donor) stem cell transplant if my body is able to handle another transplant.
AC
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: Relapse immediately following stem cell transplant?
Hi Claire,
My name is Kim and my sister is part of the reason I'm still here. For us, it's sometimes harder on her than it is me.
Try to have hope and believe it will be ok. Keep asking questions. I relapsed very quickly after transplant. As a person of color and nonsecretory, there's little data, but the prognosis for POC and age play a huge factor. My point is, everyone's different, and as much info as you, your sis, your team of docs can come up with will help. Please check my intro in Member Stories and my posts, particularly my most recent "Roller coaster and return to work" and see if they help.
There is also an NIH clinical trial website that is very technical that I check from time to time. It takes me a while to understand, but between reputable web sources, this forum, my team, I keep asking questions until i do. I have had docs in the Middle East, the UK and here in the US. Keep asking questions.
I'm not on here often, but I pray for nothing but the best for your and yours. That is a common thread on this forum. Godspeed.
My name is Kim and my sister is part of the reason I'm still here. For us, it's sometimes harder on her than it is me.
Try to have hope and believe it will be ok. Keep asking questions. I relapsed very quickly after transplant. As a person of color and nonsecretory, there's little data, but the prognosis for POC and age play a huge factor. My point is, everyone's different, and as much info as you, your sis, your team of docs can come up with will help. Please check my intro in Member Stories and my posts, particularly my most recent "Roller coaster and return to work" and see if they help.
There is also an NIH clinical trial website that is very technical that I check from time to time. It takes me a while to understand, but between reputable web sources, this forum, my team, I keep asking questions until i do. I have had docs in the Middle East, the UK and here in the US. Keep asking questions.
I'm not on here often, but I pray for nothing but the best for your and yours. That is a common thread on this forum. Godspeed.
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JinMingDao - Name: Kim
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 46
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