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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Chaga for myeloma - any experiences?

by JimsKayak on Fri Oct 17, 2014 11:17 pm

I collected some chaga in the wild, otherwise know as birch bark tinder fungus several years ago. I was using it for tinder, and had little interest in its alleged cancer-fighting properties until recently.

I read about many methods of making the tea. One says that alcohol must be used to extract the beneficial substances. Another says to boil the bark vigorously in water. Another says to steep in water <125 degrees F (< 52 degrees C), and soak for 24 hours. I decided on the third method.

Just for example, I may have had either no result, or a negative result, from using curcumin when I was still at the MGUS stage. My first light chain protein test was 800. The doctor had me back for another test in 3 months. My light chains jumped to 5000, bone marrow biopsy showed 90% plasma cells. I quit the curcumin, started RVD (Revlimid, Velcade, dexamethasone) chemo, and the light chains have dropped from 5000 to 2000 after the first cycle.

I'm not necessarily blaming the curcumin for the jump in proteins. It may have happened in spite of the curcumin, or because the particular supplement I used was ineffective. But I sometimes wonder about the logic of using powerful antioxidants while cancer cells are proliferating. Are these "smart" enough to see through the chemical "camouflage" that cancer cells wear? I'd hate to think that the curcumin protected the new cells from damage :? On chemotherapy, aren't we trying to KILL cells?

Back to the chaga. I searched for the most skeptical information I could find, and the ONLY negative comment I did find was from a Famous Cancer Hospital's website which said that it "may interfere with the action of some medications". That's all it said. Chaga's advocates claim that it DOES recognize cancer cells, among various other claims of heath benefit.

Any experiences?

BTW, I also quit smoking, figuring that if anything might interfere with chemo, it might be the hourly toxin dump I was subjecting my body to.

JimsKayak

Re: Chaga for myeloma - any experiences?

by dranton on Sat Nov 22, 2014 11:45 pm

Jim:

We have been exploring the same issue. We have family up in Alaska who recently gave me a bag of Chaga and some tea bags. We just had the BMT consult and asked that team what they thought. Their reply was similar to my oncologist's when we brought up essentials oils before treatment. I think their comments made a lot of sense.

Our doctor said he didn't have a problem with essential oils until treatment began. His major concern was that treatment is so complex that having another agent involved in the mix only confuses the situation. It makes it hard to tell what is affecting the cell counts, side effects, etc.

With regard to chaga specifically, the hospital team also expressed some concern that, because it is a fungus, I might be introducing not just a substance but an organism that could cause unknown effects. They also described a patient who had ingested essential oils and had an allergic reaction.

My take-away is that use of substances like this really does introduce unknown elements that might be beneficial, or that could interfere with treatment, or make things worse. All of us have to make our own decisions. I will say that I did find a study that showed at least one anticancer property of Chaga, but I don't recall if it was a lab/cells or in person study.

I hope these comments are helpful. Talk to your doctor, as well.

--Anton

dranton
Name: Anton Tolman
Who do you know with myeloma?: Self
When were you/they diagnosed?: August, 2014
Age at diagnosis: 51


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