Hi, I'm Suzanne

[suzbel77]

I had a single mastectomy in January of 2015. Nothing in the lympthnodes, so was able to proceed with reconstruction. I have been taking Anastrazole since and will be for another 2 and 1/2 years. I want to connect with others on this med to compare side effects.

[stayblessed]

Hi,

I took exemestane

I have severe hot flash

Trigger finger

Hair thinning

Dry vagina

[BklynCatwoman]

Hi Suzanne,

You've come to the right place! Along with Mary Vetting, I am the co-facilitator of SHARE's "Coping with Aromatase Inhibitors and Tamoxifen" support group. We meet once a month in SHARE's midtown Manhattan offices but have been known to have people from out of the area phone in on a conference call. Our next meeting is Thursday, December 16 at 6 pm. I'll give you the specifics if you'd like to dial in.

In the meantime, are there any specific side effects you'd like to discuss? I had a single mastectomy in 2013, failed reconstruction and have been on AIs since September 2013. They each had bad joint pain side effects which became very difficult to deal with. I worked my way through all 3 of the main ones: Anastrazole, Femara and Aromacin. I am now on Tamoxifen, which generally isn't used for post-menopausal women like me, but so far, so good.

[suzbel77 in reply to BklynCatwoman]

I don't have joint pain, I'm just exhausted all of the time and just want to sleep all of the time. I used to feel energetic and younger than my 62 years. Now I feel tired and old. I know that's nothing compared to what some cancer survivors experience.

[BklynCatwoman in reply to suzbel77]

Sorry to hear about your exhaustion. Have you mentioned it to your doctor? It's important that he rule out that it isn't caused by something else: vitamin deficiency, low blood sugar, etc. It can be any number of things. He might be able to give you something for the fatigue. These meds also deplete calcium from your body (except Tamoxifen).

Another option is also to try one of the other meds. Quality of life is important. Having survived breast cancer, you don't want to feel exhausted all the time! It might be a good time to discuss this with your doctor and look at your options, if you haven't already.

Good luck!

[Hidden]

First go round w/Arimidex was in 2006 after lumpectomy & radiation. No side effects.

Recent after mastectomy & chemo in 2016 had terrible side effects joint pain.

[suzbel77 in reply to Hidden]

How long will you have to take it? I am so sorry your cancer returned. That is what I'm sure we all dread.

[BklynCatwoman in reply to suzbel77]

Hi Suz,

Right now the recommendation is usually to take an AI for 10 years. It used to be 5 but they've found that 10 is better. After 10, there are no additional benefits.

Cathy

[suzbel77]

Thank you!

[Hidden]

Arimidex gave me joint pain. Aromosin was worse. Had multiple unbearable side effects. I'm triple neg, so I stopped all AI's. AI's not really helpful w/triple neg. My oncologist said okay. Niw I'm fine. Quality of life 100% better now that I'm off meds.