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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@windyshores

@deechase like many of us, you have a very complex situation with conflicting priorities medically. However, I am not sure why you did not have chemo with an Oncotype of 30. From the site:

"Patients with Recurrence Score results 26–100 significantly benefit from the addition of chemotherapy to endocrine therapy.2,3"

Of course when I was diagnosed the TailorX trial was not done yet and noone knew what to do with intermediate scores like, say, 18. Many intermediate score patients were having chemo back in 2014.

You were taking 4 times the usual dose. And as discussed on this forum, studies of letrozole showed that even 20% of that usual dose of 2.5mg was effective. So you were taking 20 times that.

It is mysterious why that would kick in periods. One would think it would mean estrogen suppression for sure.

Have you tried just 2.5mg alternating days to start? What grade and type of cancer did you have and how strongly responsive to estrogen?

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I just went by my physician's recommendations that chemo would do more harm than good with the size (0.7 mm) and grade of my tumor PT1bN0M0 ER+ (91-100%), PR-, HER2-, grade 2 invasive DCIS, lymph nodes biopsied but negative.

Regarding the anastrozole, I was in a study that gave me 10 times the normal amount, and that was a huge failure. That is why they did not want me to be back on the med.

Also, as I did some research in PubMed, I found out that AIs are used to help infertile women actually be able to conceive. That raised some red flags for me.
https://www.sciencedirect.com/science/article/pii/S1521690X18301167?via%3Dihub
https://obgyn.onlinelibrary.wiley.com/doi/10.1111/aogs.13395
To answer your question, I have not tried 2.5 mg on alternating days because they did not want me to go back on anastrozole at all.

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@tygerrag2

I decided to start an AI, every other day, to see how I tolerate it. But, I still plan to continue research on natural treatments. I’m thinking of possibly seeing a functional Dr., Is that the type of dr. That has helped you?

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I see Dr. Stacy D'Andre in Integrative Medicine, and she is wonderful!! Highly recommend her. My medical oncologist was Dr. Minetta Liu, but she left Mayo, so I no longer have a med onc doc. Need to figure that out.

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@deechase

I see Dr. Stacy D'Andre in Integrative Medicine, and she is wonderful!! Highly recommend her. My medical oncologist was Dr. Minetta Liu, but she left Mayo, so I no longer have a med onc doc. Need to figure that out.

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Yikes, that study that had subjects on a mega dose of anastrozole...well, I'm very glad that you're no longer taking that much.

Is Dr. DeAndre at Mayo? And, if so, in which 'campus'?

I hope you get a great oncologist soon. I'd feel less secure if I didn't have one prescribing and evaluating blood tests and seeing me every 6 months for a physician-done breast exam.

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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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Does anyone have information on Fermented Soy as an additional ingredient in vitamin supplements? I also had a lumpectomy 7 years ago and thus far, according to the yearly mammogram, thank God I'm ok. The reports on soy and breast cancer are very confusing. (I'm specifically referring to Fermented Soy.)
Thanks!

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@callalloo

Yikes, that study that had subjects on a mega dose of anastrozole...well, I'm very glad that you're no longer taking that much.

Is Dr. DeAndre at Mayo? And, if so, in which 'campus'?

I hope you get a great oncologist soon. I'd feel less secure if I didn't have one prescribing and evaluating blood tests and seeing me every 6 months for a physician-done breast exam.

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It certainly was a megadose, one I thought to be setting the study up for failure, IMHO. I'm very thankful not to be taking that much as well. Whew!

Yes, Dr. Stacy D. D'Andre is at Mayo in Rochester, MN, and she is absolutely wonderful!

Medical oncology basically dismissed me since I was not taking chemo/estrogen blockers, so I'm being followed every six months in the Breast Clinic at Mayo in Rochester as well as by Dr. D'Andre, so I feel I have a good safety net. I listen to my body. If it is whispering, I try to catch it before it starts to scream, if you know what I mean.

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@deechase

It certainly was a megadose, one I thought to be setting the study up for failure, IMHO. I'm very thankful not to be taking that much as well. Whew!

Yes, Dr. Stacy D. D'Andre is at Mayo in Rochester, MN, and she is absolutely wonderful!

Medical oncology basically dismissed me since I was not taking chemo/estrogen blockers, so I'm being followed every six months in the Breast Clinic at Mayo in Rochester as well as by Dr. D'Andre, so I feel I have a good safety net. I listen to my body. If it is whispering, I try to catch it before it starts to scream, if you know what I mean.

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It's not easy to learn how to listen to one's body at first. My doctor mom saved her own life, twice, by going with what she felt her body was telling her and disregarding the doctors' ideas. I hasten to add that they were right, according to the medical protocols at the time and she would have told a patient the same thing, but her gut (which we now know performs some activities thought the exclusive domain of the brain) instincts said nope.

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@callalloo

One thing that might be interesting to research is
3,3'-Diindolylmethane aka DIM. Some people are taking it to reduce estrogen. I don't know if it doesn though make body builders are using it to prevent testosterone from converting to estrogen to lose 'man books'. But I looked at a handful of studies suggesting it has strong anti-tumor properties for breast cancer cells. Since it's mostly found in cruciferous vegetables that are also mineral-rich, I'm doubling them in my diet. (A few of the studies noted that the vegetables are more powerful raw than cooked. I think broccoli smoothies are palatable when made with fresh apple and some ginger simple syrup. But I can drink vegetables that I otherwise wouldn't like to eat so smoothies are my
friends in getting more fresh vegetables into diet.)

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Kale is a cruciferous vegetable so I use that in my smoothies with blueberries and diced winter squash and sometimes add spinach - I use either water, green tea or herbal turmeric and ginger tea as the base of the smoothie.

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@enna

Kale is a cruciferous vegetable so I use that in my smoothies with blueberries and diced winter squash and sometimes add spinach - I use either water, green tea or herbal turmeric and ginger tea as the base of the smoothie.

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If, hypothetically, cruciferous vegetables were able to reduce estrogen to a level that is effective for hormone-driven cancers (and no, they are not), I would speculate that the side effects would be similar to the side effects of aromatase inhibitors, since most side effects are from the lack of estrogen.

There really doesn't seem to be much value in finding "natural" ways to lower estrogen. Either they don't work as well as meds, or presumably, in the unlikely event they do work, the side effects would be similar.

This is opinion, not from my doctor, but I have a close friend as well as an acquaintance who died using diet and other natural methods to combat cancer. Of course, everything helps, but I would eat cruciferous vegetables in addition to meds.

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@windyshores

If, hypothetically, cruciferous vegetables were able to reduce estrogen to a level that is effective for hormone-driven cancers (and no, they are not), I would speculate that the side effects would be similar to the side effects of aromatase inhibitors, since most side effects are from the lack of estrogen.

There really doesn't seem to be much value in finding "natural" ways to lower estrogen. Either they don't work as well as meds, or presumably, in the unlikely event they do work, the side effects would be similar.

This is opinion, not from my doctor, but I have a close friend as well as an acquaintance who died using diet and other natural methods to combat cancer. Of course, everything helps, but I would eat cruciferous vegetables in addition to meds.

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For me, the interesting thing about DIM (cruciferous vegetables being the main source) is studies showing it seems to be effective in killing cancer cells. There seems to be a lot of interest in it from the search results on Google Scholar but only time will tell which studies pan out.

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@windyshores

@deechase like many of us, you have a very complex situation with conflicting priorities medically. However, I am not sure why you did not have chemo with an Oncotype of 30. From the site:

"Patients with Recurrence Score results 26–100 significantly benefit from the addition of chemotherapy to endocrine therapy.2,3"

Of course when I was diagnosed the TailorX trial was not done yet and noone knew what to do with intermediate scores like, say, 18. Many intermediate score patients were having chemo back in 2014.

You were taking 4 times the usual dose. And as discussed on this forum, studies of letrozole showed that even 20% of that usual dose of 2.5mg was effective. So you were taking 20 times that.

It is mysterious why that would kick in periods. One would think it would mean estrogen suppression for sure.

Have you tried just 2.5mg alternating days to start? What grade and type of cancer did you have and how strongly responsive to estrogen?

Jump to this post

I just want to add that I was given the generic form once bc my pharmacist could not get my Meds… I bled from it. Immediately went to my Gyno, not the oncologist… she said generic drugs are not equivalent! She wrote my script for only non/generic so they cannot substitute. I never bled again. I wonder after hearing this if that may have been the problem . Just a thought♥️ I don’t know if the oncologist , “whom I love” would have picked that up so quickly… and maybe would have taken me off.

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