Concerned about the side effects of anastrozole

I was thrilled I did not need chemo. Radiation was a non event for me. Its these AIs that are a killer

Maybe you have an zero estrogen level too! I have never heard the oncotype test connected to radiation only chemo. My oncotype was 12 and I did 4 weeks of radiation

Does she believe the Arimidex caused your lower back to deteriorate. Remind me how long you have been on Arimidex?

Yesterday, when my doc took my estrogen levels and saw they were zero AND I complained of bone pain, he has taken me off of Femura for 2 weeks. Doc said sometimes that helps to reset the body. I might ask to try Tamoxifen. Did you have an Mri of your knee? Does your spinal doc think the Arimidex caused the spinal degeneration?

I wrote here last week that I'm having such leg, hip, and knee pain that my doctor ordered an MRI. It showed a worsening of my stenosis and spinal degeneration. I have an appointment with my spine doctor on the 9th. I'm thinking of trying an experiment (with the consent of my Oncologist) of going off Arimidex for two weeks to see if that might be the culprit. Has anyone here tried that, and if so what were your results?

Wow! Talk about being between a rock and a hard place! I had some of those side effects as well, but NOTHING like the ones you are having. Still I couldn't stand them and tried about 3 other drugs until I got on anastrozole. It has side effects but much milder, at least for me. I don't know who your docs are or where you are getting treated but you could also consider a 3rd opinion.

But honestly, if I were you, with the miserable quality of life you seem to be having, Stage I, bi-lateral mastectomy and no lymph node involvement ( although you didn't mention your HER-2 neu status or your estrogen sensitivity, which need to be considered) I would SERIOUSLY be thinking about chucking the post-hormone tx and taking my chances.

If your quality of life sucks, what's the point? That however, is a decision only YOU can make, and I myself wouldn't make it without talking to my docs about it first.

I've had TWO different types of breast cancer: triple negative, stage I in the L breast, the first time around - 11 years out on that one, and ER+, stage 1b in my other breast - 3 years out on that one. No lymph node involvement either time. Before I started anastrozole the side effects of the other drugs, even though no where near as bad as yours seem to be, were bad enough that I told my doc at Mayo that if there wasn't something else I could take my quality of life was bad enough that I wanted to consider skipping oral chemo and taking my chances (my chances of recurrence were also 15%).

Luckily we found something that worked better. I TOTALLY get where you are coming from. You are having to make a decision with incomplete information. There are NO easy answers here. I would just say, go with your gut.

Berit

Jeannie53 - I had Stage 0 cancer (LCIS) prior to invasive cancer and tried tamoxifen. That raised my blood pressure to dangerous levels and I was off of that in a month. My doctors and I agreed to 'take my chances' which then became invasive cancer 3 years later (could the Tamoxifen stop that..........I'll never know now). After my bi lateral mastectomies (that was my method....remove the whole mess)....I tried Letrozole for two weeks and developed severe joint pain, severe depression and it compromised my immune system in some way (they think) and I got mono and then shingles.........right after a mastectomy, along with lymphedema. So, I tried Arimidex a few months later and got blood in my stools. I only took Arimidex for a couple of weeks as well. All told I probably only took AI's for 2-3 months. Now my treatment method is to try and stay as healthy as possible, keep my weight down and eat right, etc. I quit sugar, carbs (mostly) and alcohol and take various pretty mainstream vitamins to keep me plugging along. My estrogen levels are 0, my progesterone is always 0 (never had much of that, hence estrogen dominance my whole life) which probably contributed to my cancer issues. My cancer was only Estrogen positive (no progesterone) and is lobular and has no other factors (not HER positive, etc). I was lucky to catch it early at Stage 1, so no chemo, no radiation.
At my last oncology visit (due again in May) my doctor said to forget about the AI's unless I have a recurrence and then I will have no choice. Hoping it won't come to that.
I'm not a fan of the AI's but I would take them if my cancer comes back and suffer through whatever I needed to........kinda like this 'living' thing
Hugs.