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the wonder of “Old School”

Oberammergaux2 profile image
29 Replies

Anyone out there doing research on Turkey-Tail Mushrooms? There is a great deal of interest in the benefits of using this supplement with cancer pts to prevent and arrest spread of cancers. I believe in Japan, they are now using this in conjunction with chemo.

My radiation oncologist gave me the green light to give it a try with the caveat that it be the purest available without any additives.

Additional tip:

Acupuncture is absolutely amazing for lymphedema (yes it can be done on the affected limb!), nausea, pain, and neuropathy. My acupuncturist has kept me moving for 18 years of this cancer fight. Find one who has experience with cancer pts!

Keep on keeping on!! 🙂

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Oberammergaux2
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29 Replies
Gonnawin profile image
Gonnawin

Interesting info...Thank You! 🌺

HelenWi profile image
HelenWi

I take turkey tail , but sporadically. I’ve been to an integrative oncologist at UCSF and he recommends alternating monthly with another mushroom— I use Stamets/7. What I noticed is that it helps your white blood count to go up. My understanding has been that it boosts your immune system but not that it actually acts on the cancer. But your mention has inspired me to take more consistently.

I developed arm lymphedema last year.. 13 years since my lymph node resection. I was really taken aback and in some ways it annoys me more than MBC. Has acupuncture actually reduced the swelling? I was concerned about poking pins into the. Affected limb. ..

Thanks for the info!

Oberammergaux2 profile image
Oberammergaux2 in reply to HelenWi

Hi

Yes! Acupuncture has been a miracle worker for lymphedema. Initially, I had to buy larger clothes to get my arm in 😳, it would actually weep. They tried everything, wraps, compression sleeves, mechanical compression machines at home….nothing helped. I went to see my acupuncturist just to see if he could help. One treatment later I could see a wrist! I have been seeing him for years now and it’s been such a gift. He does use needles on my lymphedema arm and I have never had a problem. He has been seeing cancer pts for years and helps with fatigue, nausea, pain and anxiety with each treatment. I see him about every 6 - 8 weeks or more often after any gamma treatments or particularly “stressed out” times.

Discocat profile image
Discocat

Hi

I love eating mushrooms and when my grocery started bringing some new varieties I looked into the health benefits of these...one type especially called maitake...a Japanese wood mushroom.

I was surprised to find that it's listed as an estrogen stimulating/mimicking product...so are many other types of mushrooms and even things like flax seeds too.

As I'm having 2x therapies to block my estrogen (Zoladex and Femara) I'm now careful not to over indulge in certain foods.

Be cautious as supplements have even stronger levels of the compounds in them than found naturally in the food itself.

Many oncologists are unaware of this as diet advice is subbed out to an in-clinic dietitian....you may also have one available to you.

I'd recommend that you check carefully before adding supplements to your diet.

I eat normal button mushrooms almost every day as part of my breakfast....I'm 3yrs in since diagnosis de novo with extensive, too numerous to count, bone mets. I remain stable without progression and my blood counts are good with WBC remaining above 2.9....and normally around 3.5-3.9 at the highest. I also take Ibrance and have Zometa infusions every 3 months.

All the best

Zoe

XX

Oberammergaux2 profile image
Oberammergaux2 in reply to Discocat

Hi Zoe

I got into the mushroom research after reading about Japan’s stance. Fascinating info out there. When my brilliant radiation oncologist rattled off a ton of info when I mentioned it I was amazed. I also switched to a vegetarian/vegan diet. At first I was concerned about the soy aspect with that but after speaking with our cancer nutritionist she assured me that it was not a problem and she preferred heading to vegetarian for cancer pts. Not to worry, Impossible Burgers and Veggie hot dogs are great 🙂

I guess I’m a little out of the box for my oncologists. I only used medical grade ostrich oil on my radiation burns…..drove them nuts but they kept asking what else was I using because they would heal so well. Stood my ground and lo and behold, shortly afterward there was a study done in Europe using ostrich or emu oil on burns. Hey, it was good enough for Cleopatra!

I use Frankincense and Myrrh balm (available from Amazon) for skin issues on extremities now with wonderful results.

So, for what it’s worth there’s a lot of goodness out there in Mother Nature and in age old practices.

Cheers, hugs and all the best to you!

Discocat profile image
Discocat in reply to Oberammergaux2

I'm also mostly vegetarian...with occasional seafood for the low iron issues and to add some protein. I haven't eaten meat for more than 20 years.I've been told to avoid soya products...I seem to be hyper sensitive to the estrogen boosting properties and when I used to have soya milk before the induced menopause my periods would go haywire.

There are many studies into the health benefits of Japanese foods but there are also some negatives...I have had Hashsimotos that gave me a low functioning thyroid from having too much iodine in my diet....I used to eat lots of seaweed.

Sounds like you have a good team behind you....but be careful of the amounts of anything that you introduce concerning supplements and new food items....as I discovered the disadvantages of what I thought was a healthy diet.

Oberammergaux2 profile image
Oberammergaux2 in reply to Discocat

Thank you so much Discocat! I appreciate any info I can collect 👍

Kerryd22 profile image
Kerryd22

You might find this interesting. It includes a comment from an integrative oncologist and his view on Turkey Tail mushrooms.

inspire.com/groups/advanced...

Oberammergaux2 profile image
Oberammergaux2 in reply to Kerryd22

Thanks so much Kerryd22!

There’s so much wonder out there in Mother Nature and age old practices!

Hugs to you 💕

fancydog profile image
fancydog

I take Turkey Tail mushroom supplements. There are studies that show it has some good effects in fighting breast cancer. I only take the brand Host Defense as they have done the most research. My Onc OK'd it as safe but not sure it will help, I still take Faslodex.

Oberammergaux2 profile image
Oberammergaux2 in reply to fancydog

Thanks so much Fancydog! I really appreciate your information 👍

I’m grateful for all the research offered. Here’s hoping we surprise our oncologists and take some of the sting out of pharma 😀

Best521 profile image
Best521

Possibly not so wonderful. Great article from MD Anderson confirming researchers don’t know if Turkey Tail mushrooms work. However they can come with liver and kidney toxicity. Given there are enough side effects from the cancer and scientifically proven effective treatments, I would not want to risk additional toxicities from something that may or may not work. My care team and the registered dietician at my cancer center have not prescribed them. Without scientific studies from credible sources or my oncologist’s recommendation as medically necessary, I am very leery of supplement claims and stay away . No need to risk unnecessary suffering. My body is under enough stress.

“Mushrooms can cause liver or kidney toxicity,” says Narayanan. “From what we know, these side effects tend to be mild or moderate. They are not normally severe, but they do exist.”

mdanderson.org/cancerwise/c...

Oberammergaux2 profile image
Oberammergaux2 in reply to Best521

Thanks for your reply Best521. I think we all need to do our own research, maintain sensible intake, trust our best mentors and follow our beliefs.

Best521 profile image
Best521

Unless someone has a qualified scientific background from a credible cancer center, I would not rely on my own research or another’s beliefs. There is so much quackery out there. It can be dangerous

Oberammergaux2 profile image
Oberammergaux2 in reply to Best521

I can assure you I am in communication with qualified scientists and working with a credible cancer center. I am comfortable with my own background and beliefs.

Let’s let everyone make their own choices.

Andersl profile image
Andersl in reply to Best521

Facts:

Good medical research with results that can be relied upon requires independently funded randomised studies with significant numbers and other key design factors. Not necessarily the same thing as reliance on a medical researcher with a qualified background in a credible cancer centre.

Pharma fund most cancer trials. For obvious reasons they have no interest in researching into the impact of mushrooms (or any other natural product) on cancer patients.

Paul Stammets is a microbiologist known worldwide for his expertise in mushrooms and their effect on the body.

Best521 profile image
Best521 in reply to Andersl

Yes unfortunately there aren’t any available clinical studies focused on clinical results for Turkey Tail mushrooms. Thus MD Anderson’s conclusion they may or may not work. If you have clinical studies from reputable cancer researchers and cancer centers which provide clinical data for progression free survival, overall response rate, dosage amounts, adverse effects etc, that would be great if you could share them. Otherwise promoting something which may or may not work could be potentially harmful, especially to patients with liver and kidney metastases, due to Turkey Tail’s known toxic side effects. Wonder why the National Institute of Health hasn’t studied Turkey Tail Mushrooms? The NIH is not interested in profits and they fund a significant number of the cancer studies here in the USA. Given the amount of quackery and magical thinking out there, without well designed scientific trials focused on clinical results, it would be wrong to potentially add to another’s suffering from toxic side effects as a result of promoting treatments that may or may not work.

Best521 profile image
Best521

Since 20% of liver failure in the USA is due to natural herbal and vitamin supplements. It pays to be very careful and leery. Good researchers question everything.

ncbi.nlm.nih.gov/pmc/articl...

Pimpelmees profile image
Pimpelmees

Hi to all ! I found this interesting trial of the mayo clinic. So finally there is interest in researching into the inpact on cancer of natural remedies:mayo.edu/research/clinical-...

Turkey Tail Mushrooms for women with ER+/HER2- Breast Cancer

The purpose of this study is to determine changes in proliferation (Ki-67) in ER+HER2-breast cancers that receive turkey tail administration

I'm not taking it yet but I will order tomorrow. If the Mayo clinic thinks it is worth a tryal, I think it is worth a try. And Turkey tail is a hepatoprotector.

Have a nice week!

Oberammergaux2 profile image
Oberammergaux2 in reply to Pimpelmees

THANK YOU! 💕

Best521 profile image
Best521 in reply to Pimpelmees

Unfortunately this study excludes patients with Metastatic Cancer, patients on Chemotherapy and patients on Concurrent Endocrine therapy (Selective Estrogen receptor Modifiers or Aromatase Inhibitors) so it won’t be helpful to us. Safe to say the Mayo Clinic is not looking into Turkey Tail mushrooms as a treatment for Stage IV Advanced Breast Cancer; nor could this be construed as an endorsement. Hopefully there will be a trial one day which is able to answer the question but until there is, there is no need to potentially add to liver and kidney toxicity or potentially cause harm to others by promoting unproven treatments when there are already available proven effective treatments.

Andersl profile image
Andersl in reply to Best521

As someone has said previously, we make our own minds up based on our individual beliefs from the information available.I wouldn't say there's been no trials with mushrooms and people with cancer. I just haven't heard of any. However, given how Pharma operate eg suppressing info on natural ways of improving health, that doesn't surprise me.

Best521 profile image
Best521 in reply to Andersl

Yes this is the argument the Quacks found out on the internet promote. They are never able to produce the scientific studies showing their treatments work. Without rigorous scientific studies proving effectiveness, promoting unproven treatments without evidence is wrong, unethical and dangerous. It is cruel to provide false hope to cancer patients or potentially add to their suffering. Magical thinking, conspiracies, and quackery proliferate but beliefs just don’t cut it. We need well researched evidence. Maybe one day there will be a study or proof. I will be the first to sign up. Until then I will go with the treatments my wonderful Oncologist and cancer team prescribe.

Praising profile image
Praising

where do you get it? I’ve read studies am taking some

Oberammergaux2 profile image
Oberammergaux2 in reply to Praising

I bought the “Host Defense” brand from Amazon on the recommendation of my acupuncturist who deals in Chinese medicine. Please be sure to check with your pharmacist for any interactions (mine was happy to do further research on a site they have access to) and run it by your MD.

I don’t take Anastrozle. I take Afinitor and Exemestane, I have been on those meds for about 16 years.

Praising profile image
Praising

where do get pure turkey tale. Yea I’ve read its benefits

Oberammergaux2 profile image
Oberammergaux2 in reply to Praising

I bought Host Defense capsules from Amazon. It was the brand recommended by my acupuncturist. See what you think about its reviews.

Praising profile image
Praising

thanks. I will. I m hoping to strengthen our immune system. Fatigue.

Praising profile image
Praising

that’s what I am taking!

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