I believe that the fact that I was young and healthy (vegan/raw foodist) at the time of diagnosis, and that I consulted with a Naturopath as to what supplements to take while going through multiple myeloma therapy…made a tremendous difference
Hi David-I am almost 3 years post multiple myeloma treatment allogeneic transplant (matched sibling) for 17 del, IgA kappa myeloma, stage IIA, no bone lesions, only anemia. I have had mild gastrointestinal graft versus host disease (GI GVHD) (on sirolimus for that) and I have slowly added back in my supplements as the GVHD is resolving.
I take BCM95 curcumin, green tea, resveratrol, fish oil, grape seed extract, vit.K2, calcium & magnesium, vitamin D3 and boswellin for GI (I have history of irritable bowel syndrome (IBS). I was taking Wobenzym early on and I may add it back in. The enzymes were upsetting my stomach. The green tea and resveratrol I just added back in this week. I noticed that the curcumin and resveratrol lowered my siromilus levels, so I backed off after transplant.
My latest blood work finally shows normal free-light chain levels (they have been below normal) and ratio. No M spike. I am told that I am in complete remission (CR). My concern is trace amounts of IgM and lambda paraproteins now showing up in my blood. I had IgA kappa myeloma.
My oncologist doesn’t have an explanation and my transplant doctor thinks it is a temporary anomaly, it has shown up once in October blood work and again a week ago. Have you ever heard of this in other patients?
My oncologist suggested going back on Revlimid but my transplant doctor thinks it is unnecessary. He said that if I was developing another form of myeloma it would be IgG or IgE, it would not likely be IgM. Any ideas?
Susan
Hi Susan-
Let me begin this reply by saying that I am impressed with your therapy. An allogeneic transplant for MM is relatively rare. Three years of complete remission is excellent. Congrats.
I take many of the same supplements that you do. I have no experience with IBS. Or GVHD. Again, you are a champ. Regarding your question about trace amounts of IgM in you blood while in CR, I agree with your transplant doctor in that I believe the change is temporary. I think this because I wrote a blog post last week about freelight chains being temporarily out of the “normal” range. Though I don’t understand the science completely, this issue is your immune system re-growing after your allo SCT.
To learn more about how you can maintain your complete remission, please watch the short video below:
Let me know if you have any questions.
Hang in there,
David Emerson
- MM Survivor
- MM Coach
- Director PeopleBeatingCancer
Recommended Reading:
Thanks David for your reply.
My latest blood work came back absolutely perfect except for the trace paraproteins. I believe that the fact that I was young and healthy (vegan/raw foodist) at the time of diagnosis, and that I consulted with a Naturopath as to what supplements to take while going through multiple myeloma therapy (ignoring my oncologist’s advice to avoid all supplements) made a tremendous difference.
I had no major side effects from either the chemo nor the transplant. I would have loved to have gone to your doctor, but being a single woman with little savings, I had to go where my health insurance dictated and pray for the best. It’s a sad commentary on health care in our country.
Thank you for your site. You are an inspiration to all of us.
Hi Susan-
Regarding Burzynski and antineoplaston therapy (ANP). Like any form of chemotherapy, toxic or otherwise, there is risk that a patient does not respond. Since you have responded so well with a difficult form of MM (chromosome 17 deletion), I think you made the best choice for you.
I think you can maintain CR through diet, frequent, moderate exercise, supplementation, etc. I am going to put your email address on the list of cancer coaching clients so that we stay in touch. Again, if that’s okay with you.
Thanks,
David Emerson
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