Why are dosages for estrogen suppression drugs one-size-fits-all?

I have been on three different AI inhibitors. I have had an allergic reaction when I have been on each different AI. Three trips to the ER. I also had a small ischemic stroke while on the anastrozide. I made the decision after my last ER trip to discontinue the AI inhibitors. I have given up wine and sugar. I have lost weight so that my BMI is less than the normal 25. I do not want my cancer to return, but I do not want to live in fear every day!
Has anyone’s oncologist told them what percentage the AI inhibitors really help? I can not find the percentage.

Ellie, I am right there with you. I just got back from post BC surgeon (lumpectomy) and she was quizzing me about refusing AI drugs. 2 weeks my oncologist will do the same again. What were the specifics of your BC? Mine is HR/PR+, clear margins, Invasive Ductal Carcinoma, Grade 1, slow growing & I also chose 5 targeted radiation. treatments. I am 71 , 124 lbs, in good health & The side effects scare me to death.

Yes, I got awful side effects from Letrozole and refused to take it any more. It seems many hospitals (Mayo Clinic, NYU Lagonne, and Memorial Sloan Kettering ) have doctors experimenting with different dosages. For Letrozole, I heard 1/2 dose, 1 dose every other day, and every every two days. I'm now on Anastrozole and am taking it every other day which my doctor doesn't like. There has been data showing that people taking Letrozole every other day have the same mortality rate as those who take it every day.
Helene

Haven’t posted for awhile. I have had 2 post operative/treatment exams since last October. Bloodwork, mammos and exams at the Mayo. Good results on both occasions. Initially, my ONCO doc insisted and really pushed the AI drug approach. I resisted and refused to go that route. However, now she only smiles and encourages me to be active, eat well, take vit D. I feel wonderful and continue to advocate for myself and seek comfort in praying and trusting.

I’m now on exemestane. Eason Anastrozole fir 28 months and my back pain will never end now because of the side effects of Anastrozole. I don’t find any difference at all with the Exemestane so I only take it Monday, Wednesday and Friday. That’s purely because I fear tge cancer will return. I was diagnosed with oestrogen positive cancer and had lumpectomy, 2 rounds of chemo. Was meant to have 4 rounds but nearing my 3rd round I collapsed at my gp surgery ( good place to collapse🤣) and ended up in hospital for 5 days. I decided no more chemo after that. Then I had 5 rounds of radiotherapy and then Anastrozole. I’m fighting the pain and am walking more and have gone back to swimming. I was very worried re pain in my back but had mri on 13 July and it was clear if any secondary cancer. X

What astonishes me is the failure of most physicians to understand and then communicate to their patients the rigorously researched effects of diet modifications around glucose, fructose, ketosis, and intermittent and 7-day fasting on improving standard of care and even acting outside standard of care.

Dr. Thomas Seyfriend, a highly respected scientist and clinician of Yale and now Boston College and many international researchers have been working on metabolic therapy for cancer. This isn't some wacky theory. It fits with Warburg's fundamental theory of how cancer cells survive as well as the emerging evolutionary paradigm of cancer itself. But all the money is in genetics and in these horrid AI drugs.

One study I haven't seen yet--and wouldn't encourage because the mouse torture makes me sick--is comparing the er positive, her 2 negative mice w/ tumors after on AI/Tamoxifen vs a ketogenic diet to then measure tumor shrinkage.

On DIET ALONE (and fasting), Seyfriend and those in his research cohort have shrunk glioblastomas to near nothing. They'll never say they "cure" cancer, but they do say they can help you "manage' cancer. And they're very careful never to challenge standard of care (very openly), though they do , .

I'm about to get prescribed HT therapy and will take the script and not take the pill or else explain outright that I have several comorbidities and the side effects of these drugs would make my life not worth living--and would make my functioning impossible.

Those oncologists who minimize the side effects--are they going to pay our bills when we can't work? Pay for 24/7 nursing care? Help with the ocular side effects, liver? The musculoskeletal pain well documented in over 600 publications as of 2023 that doctors STILL minimize, because it's mostly in women?

I'm sick of it. Once again, women can just go off and suffer. We just need "mindfulness." At least the researchers on AIIMS (aromatase inhibitor induced musculoskeletal syndrome) went to the trouble of identifying through the various physical, scanning, and even genetic tests that the pain wasn't in those silly women's heads. Estrogen plays a major role in mediating pain itself, as well as in healthy tissues everywhere. Why is potentially preventing mets more important than all of the other issues I'm facing?

I'm astonished at the ongoing minimization of the side effects of this therapy (including by plenty of female doctors) and how fundamentally sexist this is. Granted, I haven't gone to prostate therapy boards to see how men are handling it, but I'd bet $100 that if they're in pain or severe anxiety that they'll get the meds they need to function ASAP whereas we'll be treated as lying hypochondriacs.

I'm early low risk too but will decline radiation for my one positive node. I have to be functional--if not, what's the point? My kids are grown. My comorbidities have already stripped so much from me and as a woman my symptoms are still disbelieved despite many stemming from a genetic condition. I need the last years of my life to be as functional as possible. But each to her own way, of course. God bless. Rant /off/ 🙂

I totally understand what you are saying. I believe you are right, that women's concern for quality of life should be part of the treatment equation.

These drugs may be life extending but at what risk?

I need to know the percentages for my particular situation before I decide to take them.

Does anyone know what percentage these AI inhibitors are helping us? When I ask my oncologist she couldn’t really tell me.

I still haven’t found a %…still researching