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?
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,
- MM Survivor
- MM Coach
- Director PeopleBeatingCancer
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.
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.
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what is your email. I would like to email you actually contact you talk to you. Very scared.Reply