Exploring other treatment options, rather than AI med

Posted by tygerrag2 @tygerrag2, Jul 23, 2022

I was wondering if anyone has explored other options for treatment, such as diet; supplements or holisitc medicine, rather that continue or start on a AI medicine. If so, has it been successful? Will appreciate your share.

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I had an Oncotype score of 30. Had lumpectomy, negative nodes, proton beam radiation, trial of anastrozole, which caused me to revert back into premenopausal state after being postmenopausal for 4 years. Scared me to death. They took me off of anastrozole. I am now working with an integrative medicine specialist who put me on turkey tail mushroom. I am also taking a ton of B12, vitamin C, B17, etc. to boost my immune system. Also, working out 2+ hours a day and eating better than I was precancer. I know there is no magic pill that cures all. It's trial and error - "you-bet-your-life" game I wish I didn't have to play.

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@deechase

I had an Oncotype score of 30. Had lumpectomy, negative nodes, proton beam radiation, trial of anastrozole, which caused me to revert back into premenopausal state after being postmenopausal for 4 years. Scared me to death. They took me off of anastrozole. I am now working with an integrative medicine specialist who put me on turkey tail mushroom. I am also taking a ton of B12, vitamin C, B17, etc. to boost my immune system. Also, working out 2+ hours a day and eating better than I was precancer. I know there is no magic pill that cures all. It's trial and error - "you-bet-your-life" game I wish I didn't have to play.

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Dee Chase
How soon after lumpectomy have you started turkey tale mushrooms, , vitamins supplements,etc?
Have you done MRI,Mammogram,etc.after surgery?
Have your holistic specialist recommended Mistletoe ?
Of course, diet and supplements are good , but not enough.
There is some holistic clinics claim the variety of cancer treatments. Would be interesting to hear from the people who have used their service .

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Tigerrag2
I am with you on your question .
But it is all depends on the initial cancer conditions , surgery and the treatments type after.
Number of holistic integrated clinic claims successful treatments.
Preliminary individual testing and than the IV injection , Mistletoe, turkey tale mushroom and other supplements , and suggestions.
Would be interesting to hear the result from the people who have used these paid treatments. for a while !!

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@monigue

Dee Chase
How soon after lumpectomy have you started turkey tale mushrooms, , vitamins supplements,etc?
Have you done MRI,Mammogram,etc.after surgery?
Have your holistic specialist recommended Mistletoe ?
Of course, diet and supplements are good , but not enough.
There is some holistic clinics claim the variety of cancer treatments. Would be interesting to hear from the people who have used their service .

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Monigue

I started the turkey tail mushroom in March of 2022. I had my lumpectomy in Aug of 2021. I started the B17 right after my diagnosis in July of 2022. I have been on other supplements for a few years now, keep adjusting/tweaking as necessary. I had a mammogram in April of 2022, which was clear. Have not had an MRI as that was not recommended since the mammogram was clear. I have not had any recommendations for mistletoe. I have also cut out all alcohol as that raises estrogen. Also have cut out as much sugar as possible as that feeds tumors. As I mentioned above, I work out at least two hours each day, which helps me both physically and mentally. I argue with myself often about the use of AIs. It's just so hard to know what to do as none of us have a crystal ball...

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@deechase

Monigue

I started the turkey tail mushroom in March of 2022. I had my lumpectomy in Aug of 2021. I started the B17 right after my diagnosis in July of 2022. I have been on other supplements for a few years now, keep adjusting/tweaking as necessary. I had a mammogram in April of 2022, which was clear. Have not had an MRI as that was not recommended since the mammogram was clear. I have not had any recommendations for mistletoe. I have also cut out all alcohol as that raises estrogen. Also have cut out as much sugar as possible as that feeds tumors. As I mentioned above, I work out at least two hours each day, which helps me both physically and mentally. I argue with myself often about the use of AIs. It's just so hard to know what to do as none of us have a crystal ball...

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Thank you for reply
Seems that we are in the same time frame . I have had bilateral lumpectomy in July last year.
No metastatic cancer in Situ.
On Tamoxifen vs Al .
No alcohol, sugar , on healthy diet. No fitness though, but active !
I have Mistletoe injection soon after surgery as alternative supplement.
My MRI and mammogram tests after don’t show the residue of cancer cells .Big surprise, because I haven’t done any chimo or radiation.
I think we are on the right truck ! The only time will tell !!
Be well

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@deechase

I had an Oncotype score of 30. Had lumpectomy, negative nodes, proton beam radiation, trial of anastrozole, which caused me to revert back into premenopausal state after being postmenopausal for 4 years. Scared me to death. They took me off of anastrozole. I am now working with an integrative medicine specialist who put me on turkey tail mushroom. I am also taking a ton of B12, vitamin C, B17, etc. to boost my immune system. Also, working out 2+ hours a day and eating better than I was precancer. I know there is no magic pill that cures all. It's trial and error - "you-bet-your-life" game I wish I didn't have to play.

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@deechase how could anastrazole put you back in a pre-menopausal state? It suppresses estrogen from the adrenals. I am really interested to hear if you know how that happened to you since presumably your hormones would be lowered or even eradicated rather than increased. Did you try a different med or a different manufacturer or did your doc conclude that all forms of aromatase inhibition would cause a problem?

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@tygerrag2 have you tried an aromatase inhibitor at all? I know I am not answering your question. I hope though that anyone who needs an AI, based on pathology and Oncotype or Mammaprint, will try different AI's and different manufacturers. It can also be helpful to realize that initial side effects may fade as the body adjusts to the shift in hormones. Many of us did not have significant issues taking them (aside from bone loss, for me, which can be addressed more easily than stage 4 cancer).

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@windyshores

@deechase how could anastrazole put you back in a pre-menopausal state? It suppresses estrogen from the adrenals. I am really interested to hear if you know how that happened to you since presumably your hormones would be lowered or even eradicated rather than increased. Did you try a different med or a different manufacturer or did your doc conclude that all forms of aromatase inhibition would cause a problem?

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I was in a study where they were giving me 10 mg of anastrozole, and it shoved my estrogen way down for a moment but then way up and I started having periods again. Horrible! That scared me and my doctor, so I was taken off anastrozole and they said I should not be on it again. My doc suggested I try another AI, but I was rather terrified by the first go-round with anastrozole; I lost trust. Also, my heart rate went into the 90s when I'm used to it being in the 60s. I feel the systemic effects of AIs were more damaging than helpful. IDK, it's really hard to say what to do. I'm trying so hard to get my cholesterol down, using exercise and fish oil supplements. Also, I don't want my A1C to rise as I'm borderline now. I'm also osteopenic and would have needed Zometa infusions. However, I've needed a fair amount of dental work done, so that would have been a real mess if I had had the infusions. There are so many things that can go wrong using the AIs and only one thing (lowering estrogen) that can possibly go right; even that is a crap shoot. Also, I had debilitating depression, which was awful. So many pieces to the puzzle ...

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@deechase

I had an Oncotype score of 30. Had lumpectomy, negative nodes, proton beam radiation, trial of anastrozole, which caused me to revert back into premenopausal state after being postmenopausal for 4 years. Scared me to death. They took me off of anastrozole. I am now working with an integrative medicine specialist who put me on turkey tail mushroom. I am also taking a ton of B12, vitamin C, B17, etc. to boost my immune system. Also, working out 2+ hours a day and eating better than I was precancer. I know there is no magic pill that cures all. It's trial and error - "you-bet-your-life" game I wish I didn't have to play.

Jump to this post

Did you 'perimenstrual state'? I.e., with hot flashes and all of that hormonal-stuff? An Oncotype score of 30 (assuming it was the OncotypeDX, they have other tests), would argue for chemo. And aromatase inhibitors. IF you can tolerate one, and there are a few out there, it would give you better statistical odds.

I too dislike the bet-your-life game (what I think of as a crap shoot with mortality always being the end result one way or the other....) so applaud everything you're doing to stay in the game longer. I kind of hope you'll reconsider the AIs though before ruling them out. The odds favor them and staying in the game means being available to benefit from any medical breakthroughs that come along.

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I had been postmenopausal since 2018, have had hot flashes since 2016 and continue to do so. One thing I forgot to mention was extreme breast tenderness while on AIs and uterine cramping. Was awful! I certainly don't need my ovaries waking up like an angry toddler. Yuck!!!

My Oncotype score did not warrant chemo (per my doc and Oncotype paperwork), only the use of AIs. I will continue to think about them as I have not completely ruled them out. I think I have my dental issues under control, finally. Fingers crossed. I certainly don't need necrosis of my jaw to contend with after all of the other things I've had to deal with. That's a definite deal-breaker.

Thanks for your kind words of support. I do appreciate them.

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