Anyone quit ANY form of estrogen suppressor super early?

TracyKin, from things I have read on the board and elsewhere, PR negative tumors are not as responsive to anti-hormonals as highly ER+/PR+ tumors. There does not seem to be a whole lot of info on this, but very generally speaking, people with ER+/PR- often have a lower ER+ percentage in addition to negative PR, and anti hormonals have a lot less efficacy for them than strongly ER/PR+ folks. If the side effects are bad, perhaps get a clearer idea about how much benefit you are actually getting from them. I understand your dilemma about insurance; you can always keep getting the prescriptions without actually taking them if side effects become unmanageable. As awful as that sounds, our crazy health system sometimes requires us to do whatever we need to do to keep coverage! One of my oncologists leveled with me and said that with my tumor (20%ER+, PR-, HER+++), the anti hormonal benefit was miniscule to nonexistent. HER also works against anti hormonals so my case is a different than yours. Both of the articles cited below are relatively old (2005 and 2011), and refer primarily to tamoxifen, Not sure if the story is different for AIs, but assume so, since I am postmenopausal and would have been placed on an AI if I decided to do antihormonal therapy.

https://academic.oup.com/jnci/article/97/17/1254/2521367/Estrogen-Receptor-Positive-Progesterone-Receptor

http://theoncologist.alphamedpress.org/content/16/3/276.abstract

bravepoint: another onc I saw early on felt strongly that an AI was appropriate. His feeling was like your doc's-- that any amount of ER positivity posed a risk and there is plenty of evidence for that. At the time I did not know anything about the role of negative PR though, and did not question him about it. Also as mentioned earlier, HER2+ status is another issue that can make anti-hormonals less effective due to "cross-talk" between HER2 and ER receptors which can lead to tamox resistance. The info on AIs is less clear. The importance of anti-hormonal therapy has been firmly established, but the degree of impact is going to vary a lot with our individual circumstances. For people having a tough time with side effects, it is worth it to get as clear a picture as possible of (the likely) individual benefit.

Thanks gracie and Hopeful. I am gathering as much info as I can before we meet to discuss options.

Hopeful, I agree with your points. The second linked article indicates AIs do work better than Tamox for ER+/PR-, assuming that the tumor cells are still estrogen sensitive. Sometimes they are, and sometimes not--the absence of PR can have the effect of making the cells unresponsive to estrogen, even though technically "positive". And again, the situation is more challenging for HER2+, PR- patients as discussed in the article. Good luck with your appointment, Bravepoint.

I tried Arimidex for 10 days and quit. Every side effect described, but the vertigo was severe enough that I would not drive and that was the end of those meds for me. Good luck to everyone!

Sara...interesting point. However until MOs start checking estrogen levels this will never happen! IMO there is a good chance a lower dosage would work. Unfortunately the protocol right now is to take it blindly and wait and see if you have a recurrence! This is a huge gap in our treatment plans and we need to speak up. Good luck to all navigating this complicated disease.

To whom it may concern,

My mother was diagnosed with breast cancer 8.5 years ago. Then she got her treatment: mastectomy, chemotherapy and radiation. She has been in hormone suppressors taking Anastrasol for 8 years. She hates the side effects, she has insomnia, her skin is dry and she has changes of mood. What she really hates is the insomnia. When she tells her oncologist that she wants to quit taking Anastrasol. the oncologist keeps reminding her that not taking her drugs would under her own risk. My mother is 67 years old, she really hates the insomnia site effect. can you please suggest me something?

Regards

She needs to tell her oncologist about her insomnia if she's still on hormone therapy, which I assume she is. He/she can prescribe something to help her. If the oncologist can't help then her pcp. Depends on what else she's taking and medical conditions on what they will prescribe for her. Ambien never worked for me. Anxiety meds can help. I know people who are on low dose Ativan or Xanax for sleep. Talk to her doctor.

Benjamin16...sorry your mom is suffering. Just want to remind you that ultimately this is your moms decision, not her doctor! Since you didn't give us all her stats I can't give you any advice. However, it seems like she threw everything at her BC and 8.5 years is a long time to be on anti hormone therapy. At some point we all have to decide about risks vs benefits. That being said there are things she could try for the insomnia if she wants to stay on the drug. Hope this helps!

I had been on tamoxifen for over a year before I started experiencing SEs in the form of excruciating joint pain in my inner elbows and knees. I thought I had bone cancer it was so severe. What I realized was the pain started shortly after I switched pharmacies due toinsurance changes. Turns out there are several manufacturers of tamoxifen and the Mylan brand was the one I had switched to that was killing me. When I went back to the original pharmacy for refills all the SEs went away. I don't have the bottle in front of me to check the brand but it stars with a T, like Tevo or something. This is the one that doesn't hurt me. So if you are experiencing extreme joint pain I recommend you try switching to one of the other brands before giving up altogether.

I'm almost afraid to post this, because I've seen so many people get slammed with negative comments, but I'm hoping for some positive feedback.

I started out on Arimidex, but I talked to my MO about the joint pain, poor concentration, and horrible hot flashes she changed me to Aromasin. Those SE'S got better and life was good. Then after a few months, I started having a lot of pain in my lower back and hips. I told my PCP about it at my regular checkup, and he referred me to a spine & pain Dr. She did an MRI, and as Seachain mentioned earlier, she said it looked like an 80 year old's spine. That was a year ago and we just did another MRI because the pain has gotten so much worse. Results: multilevel degenerative disc disease, severe spinal stenosis, 1 ruptured disc and 1 bulging. I have always been physically active, lots of hiking and gardening. Now I've been taken out of work (thank God I paid the premium for Long-term disability insurance all those years). It's all I can do to keep my house clean, work a few minutes at a time then sit for a while. If the damage is this bad now, I'm afraid I'll be in a wheelchair if I take it another 3 years like I'm supposed to. So I'm stopping the Aromasin. I would never consider stopping if it was the SE'S that I thought were so awful at the time. But this is PERMANENT damage,and it will keep getting worse. The idea of a recurrence scares me, but I'm 52 and just borrowed my 79 year old mom's spare walker to use when I'm in the yard because the DR keeps telling me that a fall could be disastrous. I have an appointment with my MO next month, and I dread her reaction when I tell her I'm stopping. But it's my bones falling apart, right?

Sorry for the long post, but this is a really big decision and I need all the support I can get.

I quit Femara and exemistane two years after DX. Went metastatic last year to bone and lungs

The Femara insert says that 20% of the prescribed dose achieves an undetectable level of estrogen and, therefore, is effective.

I have talked with my oncologist at times about this and received permission to take half a pill or take a pill every other day.

I have been taking Femara for 3 years now and have never gone ahead and split it, but I am thinking about doing that in the new year.

Zero estrogen is zero estrogen, so not sure if a reduced dose would affect side effects, but I'll let you know!