Mushroom supplements?: Good morning... - SHARE Metastatic ...

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Mushroom supplements?

SpiffyCJ profile image

Good morning! Does anyone take a mushroom extract or powder as an anti-cancer/immune system booster?

If so, which one do you take and do youfeel better?

Thanks,

Anja

66 Replies

Well Anja, I take so much in the mushroom family. First I see a Chinese Doctor who makes a mushroom based liquid herb for me with other things in there specifically for me. I have been doing this for 24 years with Breast Cancer. Then I eat as many mushrooms with olive oil, garlic, onion as I can--doesn't matter which kind of mushroom but I prefer shitake, mitaki, morels and some others. Can't beat the flavor over the stove, or other means of cooking. I do partially like cordecyps. And peak performance, Organic cordyceps is a clean product. If you buy one that might be your choice.

SpiffyCJ profile image
SpiffyCJ in reply to blms

Thank you my friend❤️

Also KOS has an organic lions mane powder you can mix with stuff.

SpiffyCJ profile image
SpiffyCJ in reply to blms

Based on your reply, I believe it has benefited you, right?I just came back from shopping and bought lots of fresh mushrooms for lunch and dinner....repeat :)

blms profile image
blms in reply to SpiffyCJ

Yes definitely!! try to sautee them in olive oil. First opinion and garlic and salt and cook. They are wonderful this way. I often put some turmeric root shaved in there and ginger shaved as well. and some fresh herbs if you choose. Delicious

SpiffyCJ profile image
SpiffyCJ in reply to blms

Yum!! I will tonight. I don't really like turmeric but I put 1/2 tsp turmeric in my daily salad daily. That way i won't taste it❤️

blms profile image
blms in reply to SpiffyCJ

I think you may find if you use fresh organic turmeric root shaved it does not taste strong at ALL and very good for you as you already know. I would not want to use the powder either--way too strong and does not dissolve well. Fresh organic and same with ginger root.

Garden-Lady profile image
Garden-Lady in reply to blms

I make fruit smoothies and add about 1" of fresh turmeric root and also ginger root.I also add turkey tail mushroom powder m

blms profile image
blms in reply to Garden-Lady

For me, I like my turmeric root and ginger root either with my carrot juice or my greens smoothie. I save the fruit smoothy as more of my protein drink and it is just so yummy.

blms profile image
blms in reply to SpiffyCJ

How did your sautéed mushrooms turn out?

I take a fair amount of supplements under the guidance of a nutritionist and re medicinal mushrooms, I take coriolus and PS7 which is an organic mushroom extract blend. Also as a vegan, I eat a lot too. I think we will see far more use of medicinal mushrooms in years to come!

SpiffyCJ profile image
SpiffyCJ in reply to JKMS

That's what I read and that's why I am exploring which ones are best. Thank you so much for your reply❤️

As an FYI My nutritionist and integrated oncologist both recommend switching up mushrooms.

So for example. A bottle of Turkey Tail followed by a bottle of Cordyceps then Maitake then back to Turkey Tail. They said it’s so that your body doesn’t develop a resistance.

Paul Stamets is the brand they recommend. They have it at Whole Foods—and on Amazon.

I have been on them since diagnosis in 2019. I feel pretty good. Is it the mushrooms? Who knows. But there is data to support they help immune function and may have some mild anti cancer properties.

SpiffyCJ profile image
SpiffyCJ in reply to Pbsoup

Thanks for that advice! I'm going to order the first bottle❤️

Garden-Lady profile image
Garden-Lady in reply to Pbsoup

It is well worth reading Paul Stamets book Mycelium Running. He is the foremost mycologist (professor of fungi) of the US.His Website is fungiperfecti.com.

He helped his mother with mushroom supplements when she had breast cancer.

He has a brilliant take of it all on Netflix. I have never watched anything so interesting as this. I’m in the UK and will be researching and purchasing recommendations from our Health Food shop nearby. Thanks ladies for the info.

Thanks! Will try and find it on Netflix. I'm already watching and reading as much as i can. Amazing all the things we Don't know that can so help us, right?

Just started watching your recommendation on Netflix," Fantastic Fungi". AMAZING!!

13plus profile image
13plus in reply to SpiffyCJ

Thanks for the title! I think I saw a mini preview but I didn't think to save it. Will do now!

That’s great. I’ve watched it twice now. So interesting. Enjoy!!

I will watch it.

SpiffyCJ profile image
SpiffyCJ in reply to Garden-Lady

Thanks! I'm totally sold on mushrooms now❤️

I do take mushroom supplements and think they really help ~ hard to know exactly what is working as I do a number of things but all scans stable (coming up to a year since stage 4 diagnosis now) and tumour markers down > 85%

I know having read up on mushrooms in Medicinal Mushrooms - a Clinical Guide that there are many benefits of mushrooms and for breast cancer there appears to be a strong case for:-

Reishi due to its inhibitory effect on NF-kB for those that have BC that is hormonally driven.

Maitake due to its supporting chemotherapy and aiding in addressing the side effects, it also appears specifically appears to support treatment of breast cancer with improvement and regression having been noted

Shiitake due to its supporting chemotherapy and aiding in addressing the side effects, it also specifically appears to support treatment of breast cancer and it also has an inhibitory effect on NF-kB pathway

Snow Fungus due to its properties in helping with radiotherapy

Turkey Tail due to its active compound PSK which been shown to support while on chemotherapy & radiotherapy and improve breast cancer survival rates

Almond or Sun Mushroom due to its supporting chemotherapy and aiding in addressing the side effects and the fact that it seems to specifically aid in the recovery of patients with breast cancer lung mets

Mesima or Black Hoof Mushroom as its been shown to have powerful properties in vitro on breast cancer cells, it also has an inhibitory effect on NF-kB

Plus I know its worthwhile ensuring that we particularly have button, oyster, shiitake and Maitake in our diet at a rate equivalent to ~ 10g per day coupled with green tea ~ 1.05g a day

I go to MycoNutri as it was set up my Martin Powell who is an expert on mushrooms and wrote the book Medicinal Mushrooms - a Clinical guide which I’ve read

So I take his PS-7 complex and Mesima. He recommends the PS-7 with hormone-dependent cancers like breast cancer because it doesn’t contain cordyceps' which has a steroidogenic action

MycoNutri Organic PS-7 is made exclusively of polysaccharide-rich hot-water extracts from seven mushrooms: Ganoderma lucidum (Reishi), Grifola frondosa (Maitake), Inonotus obliquus (Chaga), Lentinula edodes (Shiitake), Pleurotus ostreatus (Oyster Mushroom), Agaricus Subrufescens (Sun Agaric) and Tremella Fuciformis (Snow Fungus) and contains a minimum 30% immune-modulating beta-glucans.

The high concentration and diverse structure of the beta-glucans and related polysaccharides in MycoNutri PS-7 makes it ideal for broad spectrum support in chronic and acute conditions as well as during conventional treatment.

MycoNutri does supply Turkey Tail but at the moment as they are not able to market it directly due to its Novel Food status. But you can get that from MCS Formulas who is another great source of very high quality supplements set up by a guy after his wife got breast cancer

I also have a mushroom coffee ☕️ as I’ve done my Nutrition Genome which highlights I don’t process caffeine well and I would benefit from mushroom intake. Particularly lions mane so my mushroom coffee include lions mane mushrooms i get that from Navi it’s called ~ Navi Gold Mushroom elixir Coffee. I drink a cup with tiger nut milk (which is good for gut health) ~ 4/5 times a week.

Thank you for sharing this wonderful information! My oncologist and nutritionist (who works for the cancer center my oncologist is at) said I should not take any mushroom supplements as they don't know how they would interact with Ibrance and Letrozole. Neither one is big on supplements. However, they told me I could eat mushrooms, which I do but not as often as I should. It sounds like they are doing a good job for you. I am going to check out the PS-7 and the coffee. I know Four Sigmatic also makes a mushroom coffee that has good reviews, but I will check out NaviGold as well.

I love four sigmatics mushroom coffee! I also take Host Defense mushrooms and eat mushrooms almost daily. I’m on ibrance/letrezole. My last tumor markers were in normal range so I will continue with mushrooms!! I think they are very helpful with bc. ❤️Mandy

SpiffyCJ profile image
SpiffyCJ in reply to Iluvpuppies

So good to hear!❤️

Thank you for the information. Does the coffee taste good? Also, I have tried asking several times if I could put the ground coffee in a K-cup dispenser and run it through a Keurig but have not received an answer. So happy your tumor markers are normal. That is just awesome. I am going to try adding more mushrooms to my diet since my oncologist does not want me doing supplements.

Yes the coffee is really good and yes it can go through the keurig!

Thank you so much. I am going to order some and start drinking it!

I really like it with Tiger Nut milk which has a nice natural sweetness to it.

Where can I get Tiger Nut milk? I usually use unsweetened almond milk in my coffee now, but that sounds yummy!

I buy Rude Health tiger nut milk

You can apparently easily make your own (not tried that yet). I do buy tiger nuts from Amazon and soak them overnight and then make a lovely granola with them too

Thanks. I will look up that brand.

Kaydub profile image
Kaydub in reply to love2golfwell

I was told by my integrative medicine doctor at MSK that reishi interferes with ibrance and not to take it. I try to eat a lot of mushrooms and vary what I eat instead of taking a supplement.

love2golfwell profile image
love2golfwell in reply to Kaydub

I have heard that as well. I love mushrooms and am going to try incorporating more of them into my diet. I am going to look for some different varieties. I do not like raw mushrooms, but do love them cooked with some onion, olive oil and garlic!

BigHugs21 profile image
BigHugs21 in reply to Kaydub

Ask for the research on this that leads him to this conclusion so you can read up on it. I’ve had everything I take checked out by a number of practitioners and that has never been raised

I do know you need to avoid grapefruit, Seville Oranges and citrus essential oils as they affect palbociclib but never come across Reishi

I did not know we were supposed to avoid citrus essential oils with Ibrance. No one told me that and I diffuse lemon or orange oil with other oils as well as use lemon oil in an immunity boosting blend I use on my skin. Who told you not to use citrus essential oils, just curious. Thanks so much.

So I’ve recently had a consult with Jane Langridge who is a Naturopath recently trained under Dr Nasha Winters to help people with metabolic approach to cancer. She is also trained in Acupuncture, Clinical Aromatherapy, Counselling, Nutrition, Reflexology and Yoga

So she was telling me to avoid citrus essential oils with palbociclib as we were discussing what to do to help my cancer ~ so apparently particularly grapefruit and geranium that are in my shower gels (I use Neal’s Yard)

She is sending me more details so I’ll share on here once I get it after my holiday

Thank you. Please let me know what you find out. I have avoided any oils or anything with grapefruit and seville oranges but never heard anything about other citrus oils. I wish our doctors would give us all the information we need about things to avoid. I have asked several times if essential oils were okay and was told they were. Also, I had called Pfizer medical information to ask about things to avoid when I wanted to know if I could take turmeric and all they said was grapefruit, seville oranges and pomegranate, nothing else.

I eat pomegranate better stop that then ~ do you know about the research on that at all ?

Will post an update about oils when I learn more

When I first went on Ibrance, my husband talked to the people at Pfizer and they told him I should avoid pomegranate, seville oranges and grapefruit. I have not heard about any research on it though. Thanks for information about oils. Appreciate it!

Thank you so much for this excellent information!My oncologist is wary of me talking anything he doesn't know about, but isn't terribly interested in finding out either.

SpiffyCJ profile image
SpiffyCJ in reply to Garden-Lady

Exactly! Same as mine

SpiffyCJ profile image
SpiffyCJ in reply to BigHugs21

Omg you are a wealth of information!!! Thank you so much!!❤️

13plus profile image
13plus in reply to BigHugs21

I'm curious if you had any side effects when you drink coffee? I've sometimes wondered how I process it because I typically cant drink a lot (get the gitters) and sometimes it even makes me "flush my system" so to speak 😂 very quickly after drinking it!

BigHugs21 profile image
BigHugs21 in reply to 13plus

I actually like the buzz from coffee and it is something that I enjoy. But now I restrict myself to one cup of caffeine a day (usually coffee) before lunch time due to its half life ~ as the Nutrition Genome report told me the following

Caffeine-CYP1A2 - You have the "slow metabolizer" genotype for caffeine metabolism, increasing the sensitivity to caffeine intake. If you are female and taking oral contraceptives, and you have genetic variants in COMT, this can increase the sensitivity to caffeine even higher. Exercise and cruciferous vegetables may assist caffeine metabolism.

13plus profile image
13plus in reply to BigHugs21

Interesting feedback from your report, thanks for sharing that.

Hi there ! I take Sacred 7 extract which is a powder blend of lion's mane, reishi, cordycepts, Maitake, Shitake, Turkey Tail and Chaga. I add it to tea, smoothies, sprinkle it on my salad etcetra. Delicious. Here's the link from Amazon amazon.com/gp/product/B01BK...

SpiffyCJ profile image
SpiffyCJ in reply to Adele_Julia

Thank you for the link!❤️

Hello my first post I’m starting 14th year with MBC on 19th of September tradional med up to 125mg ibrance, only one shot of fultestant I started that two weeks ago I always start low dose you will be amazed it works for me lowering and side effects also taking Amerx ( horrible speller stops hormones.. I take ton of supplements after all these years I do not have money only SS I’m 70 so I pick and choose what works with alternative twice a day then turkeytail 6 pills in half morn and nite I also love Jamaican castor oil with hemp rub on tumor

Marrow plus keeps white cells normal range never had low white cell.. next takes dead cel
AnnaP668 profile image
AnnaP668 in reply to GG33

If you are on Xeloda, be aware that Maitake interferes with the xeloda. I used to take Maitake and a couple others before i started the xeloda and didn't ever have a major problem with immunity.

SpiffyCJ profile image
SpiffyCJ in reply to AnnaP668

Yikes, I'm on Xeloda, do that's very important to me. Thank you for that warning. Which ones do you take now? How long have you been on Xeloda? I'm on my 8th cycle

AnnaP668 profile image
AnnaP668 in reply to SpiffyCJ

I used to take cordyceps, reishi and maitaki. I dropped all when I started the xeloda, just in case it applied to others, too. I've only just started xeloda last week, 1 week on and 1 week off, 1500 twice daily.

SpiffyCJ profile image
SpiffyCJ in reply to AnnaP668

I'm on the one week on/one week off schedule. Maybe we could take it during the off week?

SpiffyCJ profile image
SpiffyCJ in reply to GG33

Thank you and how fantastic to hear you're 14th year of MBC survival. That is so hopeful and encouraging for us all❤️

Adele_Julia profile image
Adele_Julia in reply to GG33

Hi GG33 ! I just saw your picture of what you're taking. Used to order the same product. I switched to Sacred 7 extract. Lot easier to get the dosages as I also take a boat load of other supplements. I'm 57 on Disability in the States (US) but this neat product saves on money and is much easier to consume. Love it ! xoxo Here is the link. amazon.com/gp/product/B01BK...

love2golfwell profile image
love2golfwell in reply to GG33

Wow 14 years with MBC is amazing and it sounds like you are doing very well. So my understanding is you are taking Ibrance and Fulvestrant and Arimidex plus the supplements. Is that correct?

GG33 profile image
GG33 in reply to love2golfwell

Hello yes I’m so grateful.. my mobility isn’t as great as it was I walked with two blue European canes from 2008-2013 got a knee replacement took 5 years for the replacement to feel like me..my husband was an older psychiatrist ( 181/2 years older) loved him crazy feeling state of gratitude that I found love in this life time.. I went to a wheelchair 2015 took care of husband dressed him, bathed him, he was falling apart physically but brilliant intellectually.. I took care of him never spent lot of time thinking about my cancer .. cancer absolutely does not define me I’m so much more than a label.. vince died after doc appointment he died that next morning so blessed he said dear love you so very much thank you for loving me and taking care of me.. I stayed at our home but sold three years ago it was 1900 home took all my saving to restore and sell it.. I moved two miles away knew neighborhood well but needed to get away from old home and neighbor hood living in the past for me is useless.. got to keep going lost my love but gain a grandbaby…when I moved I dumped wheelchair and use a walker.. my bones are sore I think it’s from being in the apartment 11/2 year…was very sick 3 months with serious cellulitis finally getting over it… I thank God every day for more time in front of my recliner is John Lennon and my favorite song”image” I try to give back to the world in my small way my oncologist said you are the most positive stubborn woman …I wrote about my cancer I’m editing I took up painting to brighten friends days I choose to give positivity to the world.. so I’m grateful for life, have plans for the future ..ride stationary bike one hour a day, in well over 14 years gave up sugar , honey ..some of us believe sugar helps cancer grow, organic veggies from csa farms was vegan but needed to heal cellulitis so eat seafood wild caught, occasionally chicken and beef organic pasture raised…….I’m throwing this out to you go to the recovery room on YouTube dr. Leslie Walke many wonder videos for cancer patients and families my favorite word free excellent..truly I believe positivity love and gratitude play an important role in my survival..I must take 30 supplements a day little tricky some an hour before breakfast then breakfast meds then evening.. I’m not one for pain meds refuse opiates ( helped my 80 year old husband get off pain pump nearly killed him ..I learned respect for opiates.. I use music as my TENS machine not legal in maybe 10 states but ok in Wisconsin I have hemp thc gummies one in morning ( usually half a gummy and whole one when I sleep also every night go to Michael Sealy YouTube for hypnosis tape finally sleeping from midnight to 6-7am nice .. actually when vince died I was curious was God keeping me alive..or was I going to die too cause my work was done here.. so darn grateful I’m alive for my baby grandbaby…I know as a fact positivity and gratitude keeping me going

Painting I did of my building manager and his wife just to bring positivity and joy
Bettybuckets profile image
Bettybuckets in reply to GG33

Lovely to hear your story. I am so sorry you lost Vince…. But glad you had true love.

love2golfwell profile image
love2golfwell in reply to GG33

Thank you for sharing your story. Your positivity and the way you cared for your husband are so inspiring to me, also painting for your friends. You have been through a lot and it sounds like you are not one to give up or let this disease stop you from enjoying your life. I hope to be around a long time with MBC, learning the best ways to take care of myself, staying as active as I can and thanking God every day for another chance to be here on earth. Keep fighting. Sending you hugs.

GG33 profile image
GG33 in reply to love2golfwell

Amen

💗

I don't know. I would check with a pharmacist or the manufacturer to make sure. Please let me know what you find out.Ann

SpiffyCJ profile image
SpiffyCJ in reply to AnnaP668

Will do

I use Four Sigmatic and Laird MCT with mushrooms. There is a lot of info on the Four Sigmatic website. The Laird gave me amazing energy even before the breast cancer.

I am definitely going to look for that Netflix movie!

For those of you in the US who want to add more fresh mushrooms to your diets - if you live near an Hmart (Korean supermarket) they have lots of different varieties at good prices. Maitake, shiitake, oyster, white, baby bella, enoki, etc. Hmarts can be found in the northeast US, Texas, Atlanta, SF, and LA. In general, Asian markets will have more offerings of fresh mushrooms.

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