Today is Day 100 for me after my autologous ASCT. I am IGg Kappa without chromosonal deletions nor translocations. Out of CRAB, I have/had bone lesions.
Three days ago I was told by my oncologist that my M-Spike is .58 and my bone marrow is 8%, that I am Stable. She told me the transplant docs in Seattle said I should get another transplant. It is tentatively scheduled for 18 April.
I really do not want to do another transplant right now. The last month I have had a Major Depression episode. If I got the transplant, I would be isolated until August...up here that's the whole summer.
What I THOUGHT I was going to be told is I would start Rev/Dex and I could go back to work. I've read that Rev/Dex could lower my M-Spike and might increase my OS. The transplant doc said the transplant might increase my OS by 20%, or I might not respond at all.
I've discussed it with my oncologist and she said she'd "support my choice 110%".
I've discussed it with the transplant doc and he said it is my choice.
I've discussed it with my 19 year old daughter and she supports my choice.
It's wonderful that everyone supports my choice. I think of my Quality of Life. I think of my OS.
How am I to choose whether or not to get the second ASCT?
Please give me your feedback. I have to decide by this Tuesday.
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7 posts
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alaskanmeg - Name: alaskanmeg
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 15 June 12
- Age at diagnosis: 49
Re: Choices
Like you I have the same decision to make. I'm going on maintenance for a few months and track my m-spike and kappa counts to get more data points. If I take another two months off work I'll be out of a job making the situation even more depressing. Good luck to you. 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: Choices
hI Alaskan Meg, It's nice to hear from you here again...I am sorry to hear that you are facing such a difficult choice though! Would it be possible to get another opinion from another myeloma specialist also about your treatment options? It seems that there is more choice than ever before for myeloma patients now. Best wishes on all of it...please keep us posted!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Choices
Hi Alaskanmeg
I guess I would want to know how stable is stable? Do they think you will stay at 0.5 for months or weeks? do you know what your Mspike was before your transplant? How much has it come down? Are they using the second transplant essentially for another dose of melphalan? What do they see as your treatment after the second transplant?
In my case a second transplant would have simply delayed my allo by the number of months it took me to recover. At the end of April it will be 2 years since the allo.
All the best,
Libby
I guess I would want to know how stable is stable? Do they think you will stay at 0.5 for months or weeks? do you know what your Mspike was before your transplant? How much has it come down? Are they using the second transplant essentially for another dose of melphalan? What do they see as your treatment after the second transplant?
In my case a second transplant would have simply delayed my allo by the number of months it took me to recover. At the end of April it will be 2 years since the allo.
All the best,
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: Choices
I am no doctor. You seem to be young. I was diagnosed in June 2010 at 50. Went on Revlimid for 21 days and Velcade and decodron during the summer. Then in December 2010 two more cemo treatments to get levels to zero before stem cell transplants. I forgot to mention that they got enough of my own stem cells for at least two transplants. Received my own stem sells in January's 2011 and am on no maintenance other than aredia which started in August 2011 every three months for two years. I will try one of the cocktails first since I responded real well to it and save the stem cells for a later time. Personally I believe this is the way to go since I responded to the initial treatment. I hope this helps you. God bless you. 508-759-5799. Ken
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Ken
Re: Choices
My husband's m-spike continued to drop for about 6 months after his ASCT. He went on maintenance treatment about 3 months after the transplant. I would want a second opinion from another myeloma specialist before going through another auto transplant this quickly.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Choices
Hi AlaskanMeg,
Sorry I didn't have a chance to respond earlier.
If it were me, I probably would see if I could get a second opinion about the recommendation to go straight to a second transplant so quickly.
Is there a chance that you could arrange for a phone consultation with someone at another major myeloma treatment center? I suggest a phone consult because I imagine it's probably hard for you to travel all the way from Alaska to another treatment center.
I know it's a drag that you have to make a decision without having a really clear idea what to do. But the good part of the situation is that you have options.
Sorry I didn't have a chance to respond earlier.
If it were me, I probably would see if I could get a second opinion about the recommendation to go straight to a second transplant so quickly.
Is there a chance that you could arrange for a phone consultation with someone at another major myeloma treatment center? I suggest a phone consult because I imagine it's probably hard for you to travel all the way from Alaska to another treatment center.
I know it's a drag that you have to make a decision without having a really clear idea what to do. But the good part of the situation is that you have options.
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