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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@deechase

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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I just saw your cholesterol and fish oil comment. I finally got around to actually adding Omega 3 supplements to my regime and realized, a week later, that I felt better in some hard-to-identify-way. I'd given a few bottles to a male friend. He said that he also feels physically better since taking them. Our respective diets had few omega 3 sources other than almonds so that was an oversight on my part. I'll be curious to see upcoming cardio-profile blood work results .

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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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How was it determined you were reverted back to premenopausal stage? Did you have symptoms and blood tests were ran? Did you ever have a hysterectomy or ovaries removed prior or post treatment?

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@mssewest

How was it determined you were reverted back to premenopausal stage? Did you have symptoms and blood tests were ran? Did you ever have a hysterectomy or ovaries removed prior or post treatment?

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After not having periods for 4 years, I suddenly started up again and had breast pain and uterine cramping to the point where I could not stand up straight. I'd say that's a major regression:(

I have not had a hysterectomy or oophorectomy.

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@deechase

After not having periods for 4 years, I suddenly started up again and had breast pain and uterine cramping to the point where I could not stand up straight. I'd say that's a major regression:(

I have not had a hysterectomy or oophorectomy.

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I have never heard of this. Sorry you had to go through it.

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@mssewest

I have never heard of this. Sorry you had to go through it.

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Thanks, it was definitely scary.

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@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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@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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Just thinking here...the various tests can be confusing. There's the OncotypeDX and another Oncotype Assay thing (forgot exact name). And then there's the huge difference between the OncotypeDX "Recurrence Score" and the same test's 'Risk of Recurrence (locoregional) Within Nine Years."

If it was her Recurrence Score that was 30, her "risk" score is likely around 1/2 of that, give or take a few points. And would not "recommend" chemo as having a good reward/risk benefit. But that number is based on stat data pool if taking 'tamoxifen or aromatase inhibitors.'

Not the easiest choice IF the drugs aren't tolerable but worth giving them every try before ruling them out I think. It's easy to say that as I'm not the person dealing with the conundrum but I like the middle-path of trying a few, at different doses...if they work, fine. If not, no regrets.

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@windyshores

@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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I decided to give AI a try, taking every other day to see how I tolerate it. I’m still planning to continue research of natural options. Would like to hear from those that have tried a natural route.

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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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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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@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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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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