Herbal Supplements helpful ? - SHARE Metastatic ...

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Herbal Supplements helpful ?

JP1857
JP1857

I am currently switching from Ibrance/letrozole to Afinitor/Exemastane. But i was introduced to some herbal supplements. I want to entertain trying it all together but i am not sure if my oncologist will be on board? Should i tell him before and if he doesnt recommend the herbals should i re-consider or ? Either way i continuing with the same meds i've also been on i am just wondering if any other's have success or suggestions ? Thanks Fight On !

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Hidden
Hidden

I would run it past your oncologist. I also think MSK has information about supplements and herbs, maybe someone on this board can give you more specific info. You don't want to take something that would either make your med toxic or ineffective. I only take Chaga mushroom tincture and CBD oil, so not an herb expert.

Kimr2081
Kimr2081 in reply to Hidden

What do you use the CBD oil for? My son is a big proponent of it and thinks it Wally’s help with my anxiety so just curious to see what you use it for. We give it to my dog for her arthritis. 🐶

Hidden
Hidden in reply to Kimr2081

You know, I just take it because some literature says it kills cancer cells. I don't know what the therapeutic dose might be under that scenario. It's expensive so I probably couldn't afford it at high doses. Some people say it's good for your mood, but I take hemp derived CBD which doesn't have the THC that pot derived CBD has, so I doubt it's working for my anxiety. Sorry, not too informative there. A nutritional "advisor" advocated for Chaga mushroom tincture. It is supposed to be a good immune system booster. I had gotten lazy and away from the following, but reincorporating them into smoothies: Goji berries (in powdered form) and Acai (also supposed to be a good immune/antioxidant nutritional source. I am using Garden of Life's Super Green Food in smoothies, especially if I don't juice. Has lots of greens in it in freeze dried powdered form. I try to take vitamins, 2 dailies from New Chapter, a probiotic pill from Dr. Ohira and some omega oils, but I take so much damn medicine and pills I mostly don't get all this in in one day. I have gotten lazy, as I said, but am getting back into the supplements. I just got Kris Carr's "Crazy, Sexy Diet" book, so I might pick up some other info there. She is very big on boosting the immune system. She has a stage 4 cancer for which there is no treatment. It is slow growing but could wake up at any time. She has a wonderful website you can check out. For anxiety I meditate, read Buddhist articles, go to an occasional retreat. Tara Brach for meditation and Pema Chodron for a Buddhist perspective. Both very calming and centering when I feel like I am going to crack. Oh yes Xanax. Sometimes only a pill will do (lol) but I try not to use it often (less than 3-4 times a month). I'm on a very low dose of Elavil, an old antidepressant not frequently used but works perfectly for me. I do not feel drugged. And therapy. I don't want to subject my poor husband and few close friends to the same old broken rant. My therapist is very good at all that. I find that working/thinking about a future trip helps me (traveling has saved my sanity through all this). Currently thinking of going to Scotland next Summer. At the very least, I am learning a lot about Scotland. Seems like a magical place, especially the islands such as Iona and Orkney where civilization goes back thousands of years and there's evidence of early cultures and religions all over the place. Bet you didn't expect all this!

Kimr2081
Kimr2081 in reply to Hidden

I love your response!! I am reading the same book and actually just finished it so have a list of things to purchase. I think you are the one who initially told me about her. I also just got a book by Chris Wark, called Chris Beat Cancer and am going to start reading it. I listened to Kris's interview with him on You Tube and it was quite inspiring. Will it cure my cancer, I don't know, but it makes me feel like I have control over some part of my life. I also bought some meditations from Kris Carr. I didn't think I was much for that but I listened to a sample and liked it. I just went back to work full time and it has helped alot. It gives me focus on something other than stupid cancer!! I appreciate all your input and please keep up with all the information. We gotta stick together through this battle.

Have a good weekend.

Hidden
Hidden in reply to Kimr2081

Going to work helps me too. Gives my day structure and forces me to focus outward. At 64 I don’t know how long I want to wake up at 530 every morning, but for now it works. I also listened to and have read Chris Warks story and advice. Personally I think he got lucky (so far) that surgical removal of his tumor seems to have saved him. I hope he continues to do well and be disease free, but I am skeptical about eschewing conventional therapies in the face of metastatic disease. I wouldn’t do it. I read that Steve Jobs regretted not choosing traditional treatment early in his diagnosis. I think we have to take it all in and think about our options critically. I love Kris Carr because while she is huge on nutrition and mind body work, she herself sought out a top oncologist for her kind of cancer and doesn’t rule out trying a conventional treatment, should one be discovered for her cancer. She doesn’t make you feel bad for doing chemo and taking meds instead of curing yourself with a Vitamix. Let me know if you find any other supplements I should consider. 💕

Kimr2081
Kimr2081 in reply to Hidden

Yea I agree. Not ready to give up conventional treatment but changing my diet to be a little healthier makes me feel in control of something. I have always eaten well because i always worried about my weight but I know eating more fruits and veggies and juicing can only be good for me. If i hear of any other supplements I will definitely let you know.

Take care,

Not an herb expert, would try running it by one who is.

Definitely talk with your onc about it. One of the problems with herbal supplements is that they are not subject to FDA approval and can vary in what is actually in them, and perhaps even more important, there is very little solid research on them, meaning double blind trials. There are alot of people who will tell you that this or that "cured" their cancer but that doesn't mean it really did! And there seems to be a cadre of folks who distrust the medical community and actual science and solid research.

I would definitely run it by your oncologist or oncology nurses before you start any herbal supplements. That's what I did when I recently introduced cherry capsules to my daily regimen. If they give you the go ahead, then I would make sure you are buying from a reputable company and that you know exactly what you are taking. Some herbal supplements can interfere with traditional medicines that we are taking, so you do not want to harm yourself.

Hi JP!

I take a lot of supplements...I would trust sites such as The Truth About Cancer and Chris Beat Cancer. They give u info but don’t sell the supplements they suggest...so they don’t make money off the info they share...

I would also say I feel great. I work full time in a special needs classroom and enjoy jogging and doing charity walks and 5k’s...to my knowledge supplements won’t interfer with your treatment...

My Onc doesn’t care what I do with them and has them earased from my records if the nurses document them. (Which is a whole other ball of wax to consider I know.)

So my advice is don’t be afraid of them and if they help a little go for it! 😀

-Heather

Yes, definitely talk to your oncologist. The supplementation industry is not regulated so you need to be careful. I tried something that was "all natural " without consulting my oncologist and was terribly sick for a month. When I got off it, I immediately felt good. Here is the link for MSK mskcc.org/cancer-care/diagn...

May I ask why you’re changing from Ibrance/Letrozole? That is what I’ve been on for a year. Just curious. I take lots of supplements such as Cell Stop (found through Facebook), Curcumin, apple Cider capsules, and vitamins for my hair.

JP1857
JP1857 in reply to Halfpint2

My oncologist made the recommendation due to increased lesions on my liver. It figured the ibrance out I guess

Halfpint2
Halfpint2 in reply to JP1857

Gotcha. Damn sneaky cancer. Glad you can switch to something else. Best wishes and God Bless.

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