HER2 Support Group Forums - aromatase inhibitors

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aromatase inhibitors

Hello to everyone. I have completed chemo, radiation and will have another 9 doses of Herceptin. Because I was ER+ and PR+, my doctors want me to take an aromatase inhibitor. I have just tried Femara for 2 months and the side effects, although minimal at first, became increasingly intolerable. I am taking a break and will try Arimidex next. Any experience out there? Advice? Thanks

Re: aromatase inhibitors

I was on Femera for 2 months and then switched to Aromasen and now I am taking a 2 week break and will try Armidex. If Armidex doesn't improve the side effects I imagine I will just have to manage with all of the joint pain and hot flashes for the next 5 years. I take alot of Aleve for pain and at night I occasionally have to take something stronger.
I have 3 more Herceptins and I am anxious to see if Herceptin is causing any of this. I sure hope so!

Re: aromatase inhibitors

I started out on Arimidex but after nearly 4 years I switched to Aromasin and did really well with that.
Love & hugs,
Marlys

Re: aromatase inhibitors

Freyda,
Are you taking it at night? symptoms might lessen if taken at night.
good luck
health and happiness
sarah

Re: aromatase inhibitors

Hi,

I was on tamoxefin for one year, finally went into post meno. and switched to Arimidex. I've only been on it for just about a month. Hot flashes are getting to be a bit mutch, you will be amazed what we will put up with to increase our survival rates. I'll let let you know if anything else happens! (I sure hope not). Gods blessings to you.

Re: aromatase inhibitors

I took Femara for the first 3 years. Developed painful "trigger thumb" so switched to Aromasin. My onc says they are all interchagable and we all have different reactions to them. So I figure by switching through the course of 5 years of treatment I can get by if I need to try yet a different AI.
Keep the faith.

Re: aromatase inhibitors

Thank you all for your generous replies. It is good not to feel alone in this process. The decisions all seem difficult and the options at this point all have their downsides. I'll stay in touch.
Freyda

Re: aromatase inhibitors

I've been taking Arimidex for five years and just agreed to another two. In the early days my side effects of bone and joint pain bothered me but think this has lessoned over the years and I prefer now to deal with that rather than cancer as feel arimidex may be keeping me cancer free, either the pain has lessoned or I've learned to live with it!!!

Re: aromatase inhibitors

I have been fairly pain-free with Femara. I do take anti-inflammatory supplements such as Fish oil, Coconut Oil, Olive Oil, Avocado Oil, and several others. I also take 4000IUs of Vit D daily. Most of the time my joints feel pretty good and when one doesn't I can usually trace it back to an innocuous activity that stirred things up. For instance, I was painting a room and now my right knee is sore, but on the bright side my hands and wrists feel fine. I have read that taking Vit D lessens the arthralgia pain associated with A.I.s.

I'd institute the Vit D and some anti-inflammatories, switch to another A.I. as you are planning and try to get a few years on one of them. You may have to switch again down the road. Good Luck!!!

Re: aromatase inhibitors

I am on Lupron and Arimidex after I failed to respond to Tamoxifen. I have been taking Arimidex for about 5 weeks and I have the usual hot flashes, joint pain and moderate bone pain. I blamed Herceptin for the joint/bone pain before, but I am starting to think Arimidex is keeping it going :)

Re: aromatase inhibitors

Hi Freyda,
When I started on AI my dr. ordered Arimidex was on it for about 3 wks and started with bad headaches. Came off Arimidex for 2 wks..then back on. Things went okay for a short time, then the joint pain began. It became so severe especailly in the morning on first waking up, my ankles felt like I was 100 yrs. and I could barely walk. Ater moving about for 10 min. it would ease up.
Since this continued my onc. switched me to Femara.
Major difference and I do not have the severe joint pain. I do take Vit. A, Fish Oil, mushroom extract, and grape seed...and other supplements. (Like Laurel)
You will have to try one of the AI and see how your body responds. You can always switch if need be.
Wishing you all the best.
Jean

Re: aromatase inhibitors

Freyda,

Good luck with the switch. There was a study that showed about 50% of women who tried switching from one AI to another found relief. And it was the switch itself, not one particular AI-or-the-other, that seemed to make the difference. Once again, we're reminded that each body is different.

Since you don't way what your side effects were, it's a little hard to advise. But if it's the usual . . .

Have you tried supplementing with Vitamin D? I know several women who noted a drastic decrease in pain when they began supplementing. Alas, I do not know (nor does anyone) how much you should take -- but you could try a few thousand IUs to start and see what happens.

And if that doesn't work, there's Tamoxifen, which is much less likely to cause the "musculoskeletal" pain although it does have its own issues.

Ginny, I'm really curious about your statement that you "failed to respond" to Tamoxifen. It looks to me like you took it when you were NED so how could you know you failed to respond? Maybe I'm missing something.

Although there was much interest in testing for CYP2D6 mutations based on the theory that some people didn't metabolize Tamoxifen properly, there was pretty convincing evidence presented at the last SABCS (or was it the one before?) that there is no correlation, and I think most docs have let this idea go (if they ever signed on at all).

Debbie Laxague