Monday, January 18, 2010

Guinea Heather

Last night I could feel anger rising and even though I fell asleep exhausted by 11:30, I was awake at 3:00 a.m. thinking and getting angrier with every minute. I finally got out of bed and did some research on Arimidex and its side effects. Again.

I don't get angry very often so I allow myself these rare moments and believe they're good for me and will help me in the long run even if it's just to motivate myself. I'm sure we can all stand to get fired up a bit every now and then.

I found a discussion on Arimidex that started in 2006 and still carries on. I read the whole thing, which took more than 4 hours (all 450+ comments). It was so comforting to know that there are so many others that share these awful side effects from the Arimidex.

I had fully expected, based on what my oncologist suggested, that my side effects would have subsided by now but I see no real improvements. In fact, some days lately my fingers in particular seem worse. It helped me to read that some women didn't feel improvements until even 3 or 4 months after quitting Arimidex. Then again, there were a couple who after 5 and 6 months hadn't seen any improvements and there were some who felt some improvements but had some lingering side effects as well.

There were a lot of questions about the possibility of permanent damage from the drug and a lot of frustration expressed with doctors and the manufacturer of the drug (AstraZeneca) who do not warn patients about these relatively common and debilitating side effects. In fact, it seems that AstraZeneca really doesn't know about long term effects and how to best manage the side effects that are being reported.

I feel like a Guinea Pig! That wouldn't be so bad if I had CHOSEN to be a Guinea Pig! It makes me angry.

Still, I feel better after having read more about other people's experiences and having learned that it might just take a little longer yet for me to feel some relief. So many people's descriptions of their symptoms and frustrations echo my own ... like the woman who can hardly get herself up off the floor or in and out of the tub ... the women who try, try, try to get exercise but find it such a struggle ... and the many women who report that they feel ancient and crippled ... the women who report their hands feeling like claws ... those whose doctors tell them the joint problems aren't their concern - go see someone else. So many. So similar.

All of that aside, it's worth saying that some people are able to handle the drug very well and so it's worth trying based on its potential benefits. It's supposed to be better than Tamoxifen (for post-menopausal women) in preventing recurrences. But for many of us, I see, it becomes a quality of life issue and many choose to stop taking the drug. I'm one of those, though I will try Tamoxifen. I read that many women who had trouble with Arimidex were able to better tolerate Tamoxifen. I'm still waiting a little longer before starting it, though, hoping that my joint problems will subside first so I'll be able to distinguish the side effects of one from those of the other.

I have my moments of frustration and anger with these side effects. I had fully expected to be well on my way to recovery by now but these joint and muscle problems make recovery seem like such a distant possibility. I so want my life back and this is the only thing that really seems to stand in the way of that. I expected full recovery from treatments to take time but I hadn't counted on this. It only makes me angrier that I wasn't given a head's up about it. I expect full disclosure from doctors and pharmaceutical companies so that I can be making informed decisions. I wouldn't be so angry about this if my decision to try Arimidex had been a fully informed one. I feel duped!

I also feel pretty tired. No yoga for me this morning. I think I have to go back to bed now that I've researched, read and now vented to my team! I'd better take myself out of the game for a while because I feel like I might otherwise get myself kicked out. Go ahead, though, and slam some cancer baddies into the boards for me while I'm on the bench cooling down.

Sorry for not having anything more positive to report this otherwise fine Monday morning.

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