Discontinue AI for "quality of life": how did you choose?

Emma, you might want to talk to your onc about another AI. A lot of women have difficult SE's with one AI and nothing or next to nothing with another.

Best of luck.

Leah

I had posted this on another thread but these links might be on interest to you.:

Breast Cancer Recurrence | Background Information
http://www.gaeainitiative.eu/word_page/BC_Recurrence.htm
Lists risk factors for recurrance.

Breast cancer recurrence seen as low after 5 years
http://www.reuters.com/article/idUSN1248209720080812
The study found that women who had tumors known as estrogen receptor positive, in which the hormone estrogen is driving the tumor, had a higher risk of these late recurrences compared to women whose tumors were not this type.

Women who had low-grade, or less aggressive, tumors, actually had a higher risk of late recurrence than women who had higher grade tumors, Brewster said. "That was certainly a finding that we were surprised to see,"

Risk of Recurrence in Early Breast Cancer
http://www.lifeabc.org/risk_recurrence_more.html

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I am a stage IIB but have several high risk factors ( large tumor, grade 3, very high mitotic rate, HER2+, perimenopausal now chemopausal) I am going to try as hard as I can to stay on the Als. I will try them all if I have to but I'm still in chemo right now so I don't know what SE if any I will get. I know this must be a tough decision for you.

So many women do quit for QOL. I would hope your onc could work with you on this. Seems like you've made it 2 years and been quite the trooper. There must be some alternatives or something to minimize SE without giving you new ones. I know some of these links do talk a lot about "early" breast cancer. I know that some stage III is considered early. Still not all the information is just for "early" stage.

I'm on Femera, and while the first month was rough it doesn't bother me now.  What types of s.e. are you having?

 I told my onc to I was up for anything that didn't kill me outright.  Stage 3 is scary and I tend to think we need to throw everything possible at this disease.  It seems that it might be worth trying other AIs if Femera is intolerable for you.

I stopped tamoxifen due to severe side effects. My oncologist said not to beat myself up about it, but I worry all the time about having made the wrong desicion. However I really had no choice when it came to qualtiy of life issues. I could no longer endure the side effects and stay sane too I also seriously worry about not having had a mastectomy rather than just a lumpectomy, especially since I had multiple tumors sites. I think I will always second guess these decisions, I just hope I just never have to kick myself for them in the future..............

i was on arimidex for all most 6 years.  yes, it did affect my quality of life; aches and pains...and also sexual desire and function.  also affected my bone density.  however, once i completed my therapy, my body recovered...my bones recovered..along with exercise and supplements..and my sex life has improved.  for me, i just really wanted to complete the recommended therapy and as my doctor said; "you needed to be on the drug to avoid relapse"  i guess it is an individual decision, but for me, i would rather struggle with side effects...then relapse and be back on chemo an facing a stage IV dx.  i don't regret being on the AI.  i didn't like it...but here i am all most 9 years later and that for me is good enough for me.  my quality of life is great now...even tho i did struggle while on the AI

I'm not really anti- AI so sometimes I don't know if I should post, but my case might be useful, so... I had a really hard time with arimidex right away.  Mostly crushing depression and anxiety. We initially tried (my onc and I) cutting the dose, but I am currently off and using other means to keep my estrogen levels down. As my onc says, AIs don't cut recurrance rates- keeping estrogen levels down does. AIs are just the best way to do that. We test my estradiol a lot, as well as my 2/16 levels, and so far I am under 7 and within range to stay safe. I don't think it's for everyone- but it is possible. And I think it really is true that the drugs themselves don't do anything for us- it's the function they fulfill. It's also easier for me because I had an oopherectomy- I don't know whether it's possible to get them as low without that. Although ovarian suppression is certainly an option if you had an onc who was willing to work with you. In any case, I take DIM (4 pills a day), ground flax seed (a couple tablespoons), and have a lot of dietary restrictions, and keep my weight down. And it takes 20 points or more off my estradiol score. And I still have hot flashes, but none of the other stuff I did before. I'm not stage lll. And I don't think other people should do anything just cause I do. But I'm pretty borderline, stage-wise, I had nodes involved pre-chemo, and am BRCA+ and my onc loves me. He knows I'm high risk, and he isn't doing anything he perceives as a risk to me. Just thought you should know.

Emma 56

I was on Ai's and switched to Tamoxifen.  Both have their side effects but for me Tamoxifen is easier.  Main side effect with Tamoxifen was hot flashes and sleep issues.  The Onc put me on Gabapentin (Neurontin) and that seems to have resolved both.  

Tamoxifen is currently easier and joint issues etc are not as bad, so I will continue with the Tamoxifen.  Anything  that makes this journey doable - I am all for it!  

 Susie

Emma- as far as I know we don't really KNOW much (as I'm sure you've encountered too), but my onc says he feels comfortable around 10, up to 20 if the balance of good/bad estrogen is favorable. I don't totally get the whole balance business but as i understand it the estradiol test shows the overall level, while the 2/16 tests show the breakdown within that of good to bad. Estriol I have no idea, but i assume is the "2" or the "16"! My estradiol is currently around 8 (as compared to no treatment, pre menopausal standard levels in the 100s).

I hope whatever you do works- sleep is soo important, i think that's a fabulous thing to prioritize. I sometimes use california poppy tincture for insomnia. mild but helpful, no SEs or counter-indications.

I took AI's for 3 1/2 years and then stopped due to QOL issues....I believe that the 3 1/2 years provided benefit..how could it not!!!  The side were having too great an negative impact on my life....I tried all the AI's and tamox and it was just too much.... I started on Arimidex 3 weeks post chemo and lasted 8 months...the joint pain was horrific....also developed bilateral CTS...had surgery on one wrists....then Femara for 4 weeks...the first 2 weeks were great then side effects hit with a venegance....on the tamox....joint pain went away so did CTS, but too many GI side effects...onc gave me a 2 week break and then onto Aromasin....endured 2 1/2 years on Aromasin....developed bilateral deQuervanes tendonitis that necessitated surgery...joint pain, insomnia, depression, anxiety, memory and cognitive issues.....the side effects were impacting all areas of my life....Onc finally gave me a two month break....and I never went back...its now been almost 10 months since I stopped the Aromasin....I'm not back to the preBC me, but things are much improved over the AI's....I believe in my heart that I gave it my all...

Barb...I was 90 some % ER+ and 80 some % PR +....but I'm very much at peace with my decisioin to stop after enduring 3 1/2 years....the cancer will come back or it won't...I've given it my all....I would love to get back to where I was before Dx, but now that its been almost 5 years, I don't know anymore what is from all the Tx and what is being 5 years older...the only thing I know is that my mother functioned better at my age than I do.....On the outside I look like I function quite well, but I'm not who I was before....I compare myself to the "old" me not to other people.....I got my hair trimmed today and DH and I were just talking about how my hair has never gotten back to where it was before...then DH asked if I had any pictures of me before Dx....that he really didn't remember what it was like....so I need to go dig out the pictures from right before surgery and then also before it fell out when my gf cut my long hair for me.....

Hi all -

I have started Arimidex & am on week 3, trying to stick it out to at least BRCA testing scheduled for 5/18. I had a nasty experience with Tamoxifen, though every story is different I understand. Upshot aside from all the side effects you would expect, pain levels sent me to the ER and then through a battery of tests finally confirming extreme endometriosis & ovarian cysts. Since I am 46, it is certainly not clear whether I had a little endo & the tamoxifen "blew it out of the water" or whether it in fact was responsible for all. Letting that go. Completed a bilateral salpingo oophorectomy 6 weeks ago to both get me to the AIs and to stop the endo from spreading.

Started arimidex 3 weeks ago and already looking at QOL issues, however, being "off the bell curve" for what is described from my onc as "just a little cancer" :-)  My diagnosis description as per the form this forum provides (thank you) does not show the confusion I face -- and I am not experiencing the "support team" concept as I have rarely been able to coordinate communication between my surgeon(s), primary care doc, radiation doc, and onc doc. I try and try, but the result is either a level of "what do you want now" or "keep doing what we tell you". Blessedly I have a primary care doc that is family medicine, delivered my second child, and is traveling the road with me as best she can.

 So in short I have Stage 1 DCIS + invasive ductal (right breast) that took lumpectomy + sentinal nodes (negative) + 3 re-excisions. The last re-excision worries me as one margin was not "cleared" so to speak, and lists LCIS. After that period of 3 months, I had a stereotactic on left breast and lumpectomy revealing 3.8cm calcification -- final result noted as atypical lobular hyperplasia.

I am scheduled for BRCA review & hopefully testing on 5/18. At this point in time, I think I need those who understand to encourage me to keep on the arimidex for at least a month - but not to be afraid to keep re-questioning the system/process. I am experiencing increased pelvic pain, headache, nausua, hot flashes, and depression. But this seems to me the base level of side effects one should expect .So.... this is me, the Type A asking for help and then spelling out already what I think I should do. But I work better with a plan -- but know I need to reach out more to avoid this isolation I find myself in.... so the first step is good.  

Be in touch please if you can relate -- thanks :-)

No pain, but getting tired of no libido at 46 years old.   Depression.    But I have not gone off the pills.