Is there anyone that had estrogen positive cancer, without use of AI?

My advice is to try all AIs (including Fulvestrant) and Tamoxifen before you give up. I did poorly on Exemestane and Letrozole and OK on Anastrozole. Please be aware that in a sense all cancer drugs are toxic. Below is something I posted on a different thread. But it might be helpful.

Alternative dosing letrozole: https://pmc.ncbi.nlm.nih.gov/articles/PMC4740217/
Alternative dosing tamoxifen: https://pmc.ncbi.nlm.nih.gov/articles/PMC11101371/
Alternative dosing exemestane: https://pubmed.ncbi.nlm.nih.gov/36951827/
Alternative dosing anastrozole: No studies that I could find.

According to my medical oncologist, the studies cited above show that lower doses of AIs or Tam lower estrogen just as well as higher doses. What these studies do **not** show is that lower doses are as effective as usual (higher) dose in reducing risk of recurrence. Of course, that doesn't mean that lower doses don't work--but there's no scientific evidence that they do.

Thanks for the information. I left an email message for my doctor last Thursday, asking him if the side effects will go away with time, but I haven't heard back yet. I did stop the anastrozole though. The pain was intense. I will try them all, plus the tamoxifen, but if they're not tolerable, I'll have to take my chances. I already suffer from chronic pain, which started way before the cancer diagnosis. Lots to think about, but I will give them all a try. Thanks again for taking the time to send your reply.

I have stage one ER positive breast cancer, and had a lumpectomy with radiation. My risk of recurrence is low and while I could further reduce it with AIs I have chosen quality of life at this point. I am very willing to assume the risk after the research. All of us have a different risk tolerance. Good luck in your decision!

I have HR+ Her2- cancer, a recurrence after 32 years of no treatment after chemo +mastectomy. I tried AI's, they drove up my Blood pressure, so am now on next level, Fulvestrant, another type of hormone receptor "antagonist." Works differently than AI's. No problems with BP, just headache for a couple of days after the 2nd series of shots. It even lowered my high BP, since it has vessel dilation effects too. I take lower BP drugs with it.

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Peggy, These links are helpful, but did you find anything on alternative dosing for Fulvestrant? The side effects seemed small at first, but it is raising my BP, giving me muscle & joint pain, and a huge leap in my cholesterol & triglyceride levels within 3 months. I'm on another drug for NET tumors, so it may be the combo, but I'd like to reduce the 500mg to 250mg/month as a trial. The great thing about Fulvestrant is that it has shrunk my 9cm tumor down to 3cm. Quality of life at 75 is important to me too.
Thanks, Patty

To jardinera25: I'm not a doctor.
1. I found scientific research for AIs by Googling "Alternative dose for...". I didn't look for Fulvestrant.
2. For me, atorvastatin combined with anastrozole and ribociclib raised liver enzymes greatly and greatly increased muscle pain. Stopped atorvastatin. Muscle pain disappeared in days. Liver values took weeks to come down.
3. Some take Claritin (loratadine) and/or tart cherry juice for AI pain, since some say AI pain is caused by increased histamines. I haven't tried it. Worth researching in your case, IMHO.
4. Since your cancer treatment is working, maybe Claritin would help and no dose reduction of cancer meds would be needed--my personal opinion--I'm not a doctor.
Best of luck!

Thanks very much for these ideas, Peggy, something to research.
Patty

Yes, same diagnosis in 2022. I had a lumpectomy, 20 rounds of radiation. I tried AIs but for me I couldn't tolerate the side effects so quit after a month. I cleaned up my diet, exercised regularly, took supplements and after 3 years I feel great and the cancer has not returned. However, 2 months ago I developed a completely new cancer, not a recurrence, in that same breast that is not hormone driven like the first breast cancer. Because it is more aggressive I have elected to do chemotherapy with a mastectomy. Everyone has different reactions from AIs. Some women tolerate it quite well so you won't know for yourself unless you try and you can always stop if you have severe side effects. Also, AIs are no guarantee that you will never develop cancer in the future but they lessen the chance. I would still, if I had to do it again, not take AIs as the side effects adversely affected my quality of life and I did well going the natural route.

I am newly diagnosed w first time ever cancer HER-2 Neg, EstrogenProgesterone POS ki67-10%
Small mass Rt Breast will have lumpectomy and target radiation it’s very small T-1 I do NOT want anything further as endocrine therapy Tamoxifen OR any other type pill I hear too many side effects and whatvis proof they will prevent cancer to return?