Monday, October 27, 2008

Question for other breast cancer survivors

I posted this on the YSC boards, but who knows, maybe somebody out there in internet land can help me.

I opted for an oopharectomy and AIs (aromatase inhibitors) to fight my highly ER+ breast cancer. I started Femara in February 2006, after chemo while I was still in radiation, and I took it for two years. At the two year mark, the joint pain had become truly debilitating - I was having trouble holding a pen, getting out of bed, etc., and I was in a lot of pain. So, last February (2008) I switched from Femara to another AI, Aromasin. The side effects disappeared, and I felt relieved to be in the clear.

However, the side effects are back, and with a vengeance. Putting my feet on the floor in the morning is a painful experience. My hands ache, ache, ache and are losing strength. I'm a "fumblefingers" because I can't move fast enough and I drop things all the time. The joint or bone pain is getting serious.

The recommendation is a minimum five years of AIs, and there is talk in the medical community of ten years. That seems pretty difficult at this point in my treatment - I honestly don't know if I can do it, yet I feel that I must.

Has anyone made multiple switches of AIs? What risks are associated with switching AIs? Do they lose efficacy if one switches within the five year course of treatment?

And how do others manage the pain and manage to stay the course of treatment? Does anything help? I'm so leery of adding medication because I'm so aware of side effects, and because I've taken SO many meds already that I know I'm messing up my body...but is there an effective option?

Can anyone empathize? Any advice? Anyone?

And before you say it - yes, these are questions for my oncologist. I'm seeing her next month, and I'll ask her then. But I'm looking for the word on the street, out here in internet land, too. My onc has told me that if there are quality of life issues I have her permission to go off the drugs, but I don't want to do that. The AIs are part of how I can sleep at night, whether that makes sense or not.

Help! Thank you.

1 comment:

Anonymous said...


First and foremost I want to thank you for your blog. I was diagnosed 2 years ago right about now and your blog has been a huge support while going through treatments.

I have had alot of the same issues that you are having with AIs, especially pain in my hands and feet. I originally started having trouble with my hands and feet on taxotere. I did not have an ooph but take Zoladex shots every 3 months. I have also been taking Arimidex for 1 year. My hands and feet, along with the rest of my body ached until about a month ago when another survivor friend recommended accupuncture to me. I originally went to accupuncture for fatigue but it has made a world of difference in my hands and feet. I am back to typing, opening jars, etc. all without pain. My feet are still a little stiff but I am back to run/walking every other day. Also, it has helped me with my moods and doom and gloom attitude.

I really think that Arimidex is very important in my treatment but there were days that I just did not think that I was going to make it. I was a huge skeptic about accupuncture but it has changed my life in just a couple of months.

Again, thank you for your blog and if I can be of help to you, please let me know.