Chaga mushrooms

[EZSZ]

Does anyone drink or take supplements of chaga mushrooms, or turkey-tail?

Anyone on Herceptin and Perjeta in particular?

If so, for how long? Any side effects?

Thanks

[JKMS]

Hi there - I take a fair number of supplements as advised by a nutritionist which include turkey tail and also PS-7 which is an organic mushroom extract blend I take as a tea. I ran this past the pharmacy at the oncology centre I go to and my oncologist remains silent on the issue! I am on Letrozole and Palbociclib and have never had any side effects other than what I believe to be the positive side effect of supporting my immune system. Good luck with everything x

[EZSZ in reply to JKMS]

Thank you so much for responding. I am triple positive, so my treatment is Herceptin/ Perjeta and tamoxifen. Letrozole gave me bad side effect.

I find that oncologists, like most other doctors, know nothing or very little about nutrition and/or supplements benefits. I take no supplements, my diet includes chicken liver and only homemade food, so my immune system is strong. However, I am a believer in mushrooms, I just started chaga tea, but can't get a straight answer if it interferes with my treatment. The only answer I get is: not recommended, not enough research. That doesn't answer my question 🙂

Good luck to uou too, snd thanks again.

[mbc_carepartner]

Here is a list of supplements recommended by a naturalist who specializes in oncology and works in partnership with my sister's onc (and my sister, who has MBC triple+, is also on herception/perjeta, plus ibrance and letrozole):

evening primrose oil 500 mg capsule 2 p.o. twice a day (BID)

Vitamin D3 25 mcg (1,000 unit) capsule 1 p.o. q. day

Probiotic p.o. twice a day (BID)

Grapeseed Extract 500mg 1 p.o. twice a day (BID)

CoQ-10 100 mg capsule 1 p.o. q. day

Multi SAP 3 caps daily

Mushroom Complex SAP 1 p.o. three times a day (TID)

Hope this helps. Of course, you would do well to find a naturalist to consult -- there are many that are doing telehealth only here in the U.S. and can help anyone (across state and country lines, I believe).

[mbc_carepartner in reply to mbc_carepartner]

Here is the brand of mushroom complex SAP she takes (brand matters according to the naturopath): nfh.ca/product/mushroom-com...

[EZSZ in reply to mbc_carepartner]

This is very kind and considerate of you, many many thanks

[TammyCross in reply to mbc_carepartner]

I was on 1,000 units D3 -- then it turned out that my vit D levels were way high. Too much of anything is not healthy, even good things. Cut back to 2,000/week. Now my D levels are fine. Not maxed out, and I asked if I should take more; onc. said no. Keep it in the middle.

[EZSZ in reply to TammyCross]

Terrific. I take 10,000 units weekly.Too much is not good - I agree 🙂

[Mimigram]

Hi there, I take Chaga, mushroom complex , Premium Kinoko Gold AHCC and Turkey Tail. I have breast cancer but not the same type that you have. I also take Letrozole and a multitude of other supplements. I follow Jane McLelland’s book How to Starve Cancer. My oncologist will not prescribe any of the drugs that I want and so I go to a neuropathic MD who prescribes all my Medications and also tells me what supplements to take. I have stage four metastatic breast cancer so I feel you have to hit it with everything. Hope this helps.

[EZSZ in reply to Mimigram]

Thank you, interesting. I too feel that one needs to do ehatever needs done.The question is, I guess, do you see/feel the affect of these supplements?

[Rhwright12]

I take turkey tail either alone or in combined supplements. Doctor knows I take supplements. I took Herceptin/Perjeta for 4 1/2years….Very little side effects…Did 2 -5ks went to Disney. I liked that combo.

[EZSZ in reply to Rhwright12]

Hi, first - thank you, and I'm happy to read that you are doing well. I've started treatments (H & P) December 2020. Only side affects are wavy/broken nails, and you don't know how much you need them until you lose them, and running nose/eyes. Otherwise, pretty normal. I'm debating between turkey-tail tea and powder; What do you do with powder?

You used past language: 'I took"... are you still on Herceptin/ Perjeta?

One lady said that she's been on Herceptin for 16 years! Hopeful ☺

I maintain a very healthy diet, I am sure it helps.

[Rhwright12 in reply to EZSZ]

Yes I was on it for 4 1/2 years. Now I’m on Kadcyla. I got brain Mets a year ago in November. So they switched my meds. H/P does not cross the blood brain barrier so it doesn’t protect against brain Mets. 🤷‍♀️

[EZSZ in reply to Rhwright12]

So sorry to hear that.How are you doing?

[SusieIM]

From time to time I take Masala Chai from MUD\WTR as a tea, as a alternative to coffee. Still consume coffee but have cut back. I recently started consuming shiaqga mushroom extract, can use it in water or directly in mouth. I can't help if it really helps, tho I don't think it does any harm. My doc says it is ok for me to take it. It is important to do research on things, see if it interacts with the chemo, etc. oncologist often don't or won't say much about natural remedies, take care, keep us posted on how you are doing, Sending hugs.

[EZSZ in reply to SusieIM]

Thanks Sudie. There are some studies regarding chaga and turkey tail and scientific proof that it does help. Doctors/ oncologists are limited by what they know, and their knowledge does not include nutrition and/or mushrooms, herbs, spices benefits.Hugs to you too.

[life8888]

I had acid reflux with Turkey Tail, and stopped it because nausea from xeloda/capecitabline + acid reflux was too much for me.

[EZSZ in reply to life8888]

For sure. I eat/drink a lot of ginger, so no nausea issues.

[Shar313]

Hi. In addition to my oncologist I also see a Naturopathic oncologist and she has me taking lots of supplements which includes mushrooms. She recommends that I vary the type of mushrooms monthly so I’ve taken Maitake, Turkey-tail, Lion’s Mane, Chaga, and Reishi. I’ve taken them in pill form and powder. I prefer the powder bc I take so many other pills. I put it in water or a smoothie and I think it helps with brain fog. I haven’t had any side effects. I’m been on Letrozole and Ibrance for 3 years. My oncologist is on board with my supplements including the mushrooms. Good luck to you. 😉 Shar

[EZSZ in reply to Shar313]

That's an interesting piece of information, alternating between different types. I shall try that.The when thing I take daily in my smoothly is wheatgrass. Best intoxifier, highly recommended.

Hugs and best wishes

[love2golfwell]

I have been wanting to try mushroom coffee or other mushroom supplements, but my oncologist does not really want me taking those as she said they can interfere with the Ibrance/Letrozole. Same thing with turmeric However, when I spoke with a Pfizer pharmacist, they don't show any interaction with these things and Ibrance, just said not to have grapefruit, pomegranate or seville oranges and probably not green tea. I have been told that it is okay to eat mushrooms though, except Reishi mushrooms, which I guess could have an interaction with Ibrance. It is difficult to know what to believe. Integrative oncologists and functional medicine doctors seem to believe a lot in the power of mushroom supplements and turmeric. I think regular oncologists don't really have experience with these things and so they don't recommend them. The cancer center I go to in Florida is associated with the Sarah Gannon research institute which I guess does tons of clinical studies. When I asked my oncologist if they do any studies on alternative treatments, she said they probably did but did not offer to find out what these studies were or refer me to someone I could ask.

[EZSZ in reply to love2golfwell]

Thanks for all this information. In my humble opinion, there aren't, nor will there be, clinical trials with mushrooms, not with humans, skyway. There have been tests in the lab with mice snd dogs, that's it. The reason is: it's too costly, and who's gonna pay? There's no profit at the end of the trial.Best wishes

[love2golfwell]

You are welcome. I think you are correct about trials with mushrooms. Pharmaceutical companies could not make money on them, so there is no incentive to study them. I have seen information about trials with turmeric, which sound very interesting. I wish there was more funding for these types of research that might help people with minimum or no side effects. I see a lot of women on this site that do use supplements and repurposed medications with success but I am so afraid to take things that I know my doctor will not approve of. I am doing well right now, just had good bloodwork, and hate to mess anything up. Right now I only take a good multivitamin and a raw calcium/vitamin D supplement that also has Vitamin K and magnesium. I truly think those 2 things are helping along with the meds. We will see what the future holds. Best of luck to you.

[queeneee]

I have been taking turkey tail capsules for about 8 months, I think they help with side effects of oral chemo I am taking. I take 3 a day.. recommended is twice that, but I don't like to over do it. My policy is to tell my onc. everything I am taking, he does not comment either way. I buy the powder and put it in capsules myself with a little pill maker - its easy and much cheaper.

[EZSZ in reply to queeneee]

Thanks for the info, queneee. I assume that you are Her2 negative. I shall buy the powder too, was wondering if it's possible to add to smoothly or food.Best of luck, friend, hugs

[queeneee]

You can add it to smoothies etc , I just know that I won't do that so regularly.

[EZSZ in reply to queeneee]

Fare. I drink smoothly daily, but I already add wheatgrass; it's the best liver intoxifier. I do, however, cook lots of mushrooms, so I guess I could add it to the sauce.