After a lot of induction therapy and a tandem transplant, I have not achieved complete remission.
During this time period I have been wary of supplements as I wanted the chemo to have an unadulterated chance to wipe out my myeloma.
Well, now I'm changing my tune. Since I haven't responded real well to anything yet, I figure I'll err on the side of supplements from now on.
My kidneys and other organs are fine.
I've reviewed some excellent articles by Pat. One in particular where he lays out his supplement regiment with his rationale for each one.
I was wondering if anybody had anything current to add or subtract from Pat's article.
I'm most interested in fish oil, curcumin, vitamin c, and resveratrol. I'm also interested in some of the others that Pat mentions in his article.
I'm currently on maintenace Revlimid 10mg and nothing else. I assume I'll be giving Velcade another shot in the next month or so.
If any of the multiple myeloma doctors on this site also want to comment that would be GREATLY appreciated.
Here's a link to Pat's article...
https://myelomabeacon.org/headline/2010/12/23/pats-place-nutritional-supplements-that-i-take-as-a-multiple-myeloma-patient/
Thanks, Stan
Forums
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Re: supplements
Dear Stan,
We published a two-part series about nutrition a while back:
https://myelomabeacon.org/news/2010/08/27/guide-to-nutrition-in-multiple-myeloma-part-1-an-introduction/
https://myelomabeacon.org/news/2010/09/02/guide-to-nutrition-in-multiple-myeloma-part-2-supplements/
Part two may be particularly interesting for you since it includes information about supplements that myeloma patients may consider during their treatment.
In addition, you may want to review the following thread in which Chris (ninja performance), a newly diagnosed myeloma patient who responded very well to induction therapy, describes his diet and the supplements he is taking:
https://myelomabeacon.org/forum/post3065.html#p3065 (see middle of page 3)
We published a two-part series about nutrition a while back:
https://myelomabeacon.org/news/2010/08/27/guide-to-nutrition-in-multiple-myeloma-part-1-an-introduction/
https://myelomabeacon.org/news/2010/09/02/guide-to-nutrition-in-multiple-myeloma-part-2-supplements/
Part two may be particularly interesting for you since it includes information about supplements that myeloma patients may consider during their treatment.
In addition, you may want to review the following thread in which Chris (ninja performance), a newly diagnosed myeloma patient who responded very well to induction therapy, describes his diet and the supplements he is taking:
https://myelomabeacon.org/forum/post3065.html#p3065 (see middle of page 3)
Re: supplements
Hi Stan,
One thing to keep in mind is that achieving a complete remission is not the only endpoint that is worthwhile for myeloma. In general a reduction of the serum m-component by 90% or more ( this is defined as a very good partial remission or VGPR) after a transplant has been shown to prolong life and event free survival. I do not know if you did have a VGPR or better but I do want to point out that complete disappearance of the m-spike is not necessary to benefit from transplant.
In terms of the use of supplements of alternative medications I would refer you to the articles posted on the Beacon's website.
I am attending the ASH meeting in San Diego right now and can tell you that many new drugs are in development for this disease. When and if you need more therapy I highly recommend that you consider a clinical trial.
I wish you success and the best of luck in your trials and tribulations with this disease.
One thing to keep in mind is that achieving a complete remission is not the only endpoint that is worthwhile for myeloma. In general a reduction of the serum m-component by 90% or more ( this is defined as a very good partial remission or VGPR) after a transplant has been shown to prolong life and event free survival. I do not know if you did have a VGPR or better but I do want to point out that complete disappearance of the m-spike is not necessary to benefit from transplant.
In terms of the use of supplements of alternative medications I would refer you to the articles posted on the Beacon's website.
I am attending the ASH meeting in San Diego right now and can tell you that many new drugs are in development for this disease. When and if you need more therapy I highly recommend that you consider a clinical trial.
I wish you success and the best of luck in your trials and tribulations with this disease.
-
Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: supplements
I saw the heading of this thread and was going to come in and offer my personal experiences, then I saw my thread/experiences were already referenced.
Who knows what my response would be without the supplements, but I went from a 8.9 spike and 80% marrow to 0.1 spike ad 2% marrow after only 5 cycles. We actually dropped my last cycle to keep the poisoning (chemo) at a minimum.
Hope it all works out for ya. If you have any specific questions about my diet/supplements please don't hesitate to ask.
-Chris
Who knows what my response would be without the supplements, but I went from a 8.9 spike and 80% marrow to 0.1 spike ad 2% marrow after only 5 cycles. We actually dropped my last cycle to keep the poisoning (chemo) at a minimum.
Hope it all works out for ya. If you have any specific questions about my diet/supplements please don't hesitate to ask.
-Chris
-
ninja performance - Name: Chris Hill
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 08/04/2011
- Age at diagnosis: 43
5 posts
• Page 1 of 1