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

Turkey tail mushroom & multiple myeloma

by KarenaD on Wed Jan 06, 2016 6:04 am

There is a great deal of data published in Asia about the immune-modulatory effects of turkey tail mushroom (trametes versicolor), including many clinical trials.

In fact, in Japan, PSK (an active fraction of trametes versicolor) is a therapy prescribed routinely to cancer patients, both during and after radiation and chemotherapy, and it is a cancer therapy approved and funded by the Japanese National Health Registry.

http://depts.washington.edu/integonc/clinicians/act/mushroom_extracts.shtml

Next week, I will be speaking to my hematologist about taking a PSK supplement. Does anyone else here have experience with this supplement?

Thank you.

KarenaD
Name: Karen
Who do you know with myeloma?: Myself
When were you/they diagnosed?: November 4, 2015
Age at diagnosis: 54

Re: Turkey tail mushroom & multiple myeloma

by JPC on Wed Jan 06, 2016 7:46 am

Karen:

Just wanted to say thanks for posting this link. I had not seen it before. I scanned it, and it appears to be very well written, with good data on actual medical data for the several supplements, and an easy read. Thank you very much.

Sorry, I don't know anything about turkey tail mushroom, but will try and read up on it. Regards

JPC
Name: JPC

Re: Turkey tail mushroom & multiple myeloma

by KarenaD on Wed Jan 06, 2016 5:16 pm

I’ve just learned that a Phase I clinical trial of turkey tail mushroom (Trametes versicolor) was, in fact, conducted a few years ago in the United States in breast cancer patients. A summary of the study can be found in the link below. The results clearly showed the mushroom’s efficacy in boosting the immune system by firing up natural killer cells.

CJ Torkelson et al., "Phase 1 Clinical Trial of Trametes versicolor in Women with Breast Cancer," ISRN Oncology, Volume 2012 (2012) (full text of article)

Abstract:

Introduction. Orally administered preparations from the Trametes versicolor (Tv) mushroom have been hypothesized to improve immune response in women with breast cancer after standard chemotherapy and radiotherapy.

Methods. A phase I, two-center, dose escalation study was done to determine the maximum tolerated dose of a Tv preparation when taken daily in divided doses for 6 weeks after recent completion of radiotherapy. Eleven participants were recruited and nine women completed the study. Each cohort was comprised of three participants given one of three doses of Tv (3, 6, or 9 grams). Immune data was collected pre- and post­radiation, at 3 on-treatment time points and after a 3-week washout.

Results. Nine adverse events were reported (7 mild, 1 moderate, and 1 severe), suggesting that Tv was well tolerated. Immunological results indicated trends in (1) increased lymphocyte counts at 6 and 9 grams/day; (2) increased natural killer cell functional activity at 6 grams/day; (3) dose-related increases in CD8+ T cells and CD19+ B cells , but not CD4+ T cells or CD16+56+ NK cells.

Conclusion. These findings show that up to 9 grams/day of a Tv preparation is safe and tolerable in women with breast cancer in the post­primary treatment setting. This Tv preparation may improve immune status in immuno­compro­mised breast cancer patients following standard primary oncologic treatment.

KarenaD
Name: Karen
Who do you know with myeloma?: Myself
When were you/they diagnosed?: November 4, 2015
Age at diagnosis: 54

Re: Turkey tail mushroom & multiple myeloma

by RadiantTiger on Thu Jan 07, 2016 6:36 pm

I wouldn't get your hopes up for getting any support from your hematologist for any 'herbal' products. My experience was - "we can't verify what this herbal product is, therefore you shouldn't take it". Herbal products seem to be especially out of the domain of knowledge of mainstream oncologists. Mainly they only know about the products that might 'interfere' with the chemo drugs.

Of course, there's some truth to that, since 'supplements' are not regulated like pharmaceuticals in the US. But there are very reputable companies who do test their products for purity and contami­nates, so a good integrative medicine MD might be able to help you identify reputable products. The challenge is finding an integrative MD who also knows about myeloma.

Good luck.
RT

RadiantTiger
Name: Radiant Tiger
Who do you know with myeloma?: Myself, my deceased uncle
When were you/they diagnosed?: Feb 2015
Age at diagnosis: 54

Re: Turkey tail mushroom & multiple myeloma

by Mark11 on Sun Jan 10, 2016 7:29 pm

Another patient had mentioned a supplement in another thread that was advertised to help stimulate NK cells. There was a study on PubMed that mentioned the supplement for myeloma patients. I have never used it, so I have no experience with it nor am I recommending anyone else use it. I would be curious if anyone ever tried it. It could help a patient avoid/fight infection.

"Supplements that stimulate natural killer cells?", forum disc. started July 26, 2015

I am a believer in supplements to complement the therapies we currently use. I have mentioned previously that I was in a study looking at probiotics to avoid gut GVHD / gastrointestinal problems after allo transplant. I was told the probiotic was clearly beneficial in both areas. I had / have no problems with either and continue to take a probiotic to this day. I am fortunate to have a doctor who has an open mind with respect to supplements and tries to use them to improve the QOL of her patients. I do think a patient should discuss their use with their doctor. As was mentioned above, some supplements / complementary therapies are known to interfere with the effectiveness of current myeloma treatments.

Mark11

Re: Turkey tail mushroom & multiple myeloma

by KarenaD on Mon Jan 11, 2016 9:14 pm

I spoke to my hematologist today about turkey tail mushroom. He said that he had not heard of this supplement before in relation to myeloma, but indicated that he would support my decision to take it if I first checked with the cancer centre pharmacists, to make sure that it did not interfere with my bortezomib and cyclophosphamide drugs.

Further, he thought that this supplement might be more appropriate to take after my autologous stem cell transplant, when my immune system will be most compromised, and when I am not on any chemo drugs with which this supplement could interfere.

KarenaD
Name: Karen
Who do you know with myeloma?: Myself
When were you/they diagnosed?: November 4, 2015
Age at diagnosis: 54

Re: Turkey tail mushroom & multiple myeloma

by RadiantTiger on Thu Jan 14, 2016 2:29 pm

Hi Karena,

I went off almost all supplements during the transplant period. Transplant is serious business, so if there are problems, the doctors want to eliminate all 'unknown' variables.

For example, shortly after my transplant, my liver enzymes shot up dramatically. First thing they asked me was 'are you taking any supplements'? I wasn't, so then they decided it must be my anti-fungal med that was causing that. So they stopped the anti-fungal med, and my enzymes normalized.

Good luck with your transplant! I am 3 months post transplant, and feeling pretty darn good again!

RT

RadiantTiger
Name: Radiant Tiger
Who do you know with myeloma?: Myself, my deceased uncle
When were you/they diagnosed?: Feb 2015
Age at diagnosis: 54

Re: Turkey tail mushroom & multiple myeloma

by JPC on Fri Jan 15, 2016 9:04 am

Hello RT: Thank you very much on the update of your autologous stem cell transplant (ASCT). I am glad you are recovering well and getting back on your feet!! I hope it continues.

Regards, JPC

JPC
Name: JPC

Re: Turkey tail mushroom & multiple myeloma

by KarenaD on Fri Jan 15, 2016 10:50 am

Hi Radiant Tiger,

Thanks for your comments. I'll be discussing supplements further with my transplant hematologist next month.

I'm so glad to hear that your ASCT went well and that you're feeling good. These are the stories that keep me hopeful and moving forward!

All the best,
Karen

KarenaD
Name: Karen
Who do you know with myeloma?: Myself
When were you/they diagnosed?: November 4, 2015
Age at diagnosis: 54

Re: Turkey tail mushroom & multiple myeloma

by Robert on Fri Jan 15, 2016 3:04 pm

Mark,

Do you mind saying which probiotic was studied and that you continue to take?

Thanks!

Robert

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