Problems with Femara and tamoxifen

fauxgypsy · 03-27-2008, 02:31 PM

I don't know how common this is but I just thought I would see. I couldn't take the Femara because of the severe mood swings it was causing. So I started Tamoxifen. Better for my bones, etc. My arm on the mastectomy side ached for months, finally getting to the point that it was interfering with my sleep and other activities. Then part of my hand started swelling. First I was told that it was not lymphedema, then that it was. Then in one of the very tender areas I developed phlebitis. I looked like I had been scalded. I quit taking the Tamoxifen for a couple of weeks because it can cause phlebitis. The swelling in my hand and arm got better and the pain went away. I started taking it again and the pain and swelling started coming back. Stopped it and it got better. The oncologist switched me to Arimedix this week. I had just assumed that the pain and swelling were from the surgery. I wonder how may people have had that happen and not known what was causing it. Now I am hoping that I have no bad side effects from the Arimedix. I have no idea what my options are left if I cannot take this one.
I am still getting Herceptin every three weeks. I have hip pain and some other side effects from this but I am looking forward to an end to it in July. That makes it bearable. Has anyone chosen not to take the the estrogen blocking drugs because of side effects?

Leslie

Joanne S · 03-27-2008, 04:27 PM

Leslie,

Sorry to hear about your side effects. I've been on Tamoxifen for 8 months with only minimal hot flashes and no other side effects. My doctor switched me to Arimidex

after checking my hormone levels. I started taking it two weeks ago and I've been having a difficult time with

overheating---hot-sweaty-flashes to the point that my hair, as well as. my face and neck gets dripping wet . I went to see my breast surgeon today to get her opinion on the problems I am currently having with my implant (capsular contracture). Although not what I went for, she thinks I have lymphedema... When I had problems with my arm last year, I had physical therapy and it really healped. Keep that arm moving. Make sure you follow the do's and don'ts for lymphedema. (I posted it on this site some time ago. Let me know if you can't find it).

Hopefully the Arimidex will do the trick for you. I'm hoping that our side-effects will subside within the next few weeks.

Keep us posted. My prayers

and wellness wishes to you!

Jo

dhealey · 03-29-2008, 06:25 AM

Leslie, I have had bad side effects from arimidex and aromasin. Caused severe joint pain to where I could not function in my job. I was the started on tamoxifen and developed swelling and a rash, stopped it and started again, same problem. Even though my bio says I am still on the tamoxifen, I have not taken it since Jan. I see my onc. on Tuesday and I have decided not to try the femera as they are all about the same. Quality of life is very important to me. I am 53 and felt like I was 90 on those meds. My bone density went from high end of normal to osteoporosis in 4 months time. That can't be good. I know they are supposed to help us ER/PR pos women, but I am very active and don't want to feel that bad all the time. Best of luck to you!

TSund · 03-30-2008, 01:00 PM

curious if those of you that had reactions to the tamoxifen had the blood test that checked for the enzyme that helps metabolize tamoxifen. I don't know whether there is a connection between those particular side affects or not.

dhealey · 03-30-2008, 05:48 PM

I have not had the blood test to check for the enzyme that metabloizes tamoxifen.

Karen W · 03-31-2008, 04:34 PM

I am on Aromasin and I get what I would describe as my core heating up, just like a furnace. The heat tends to go from my middle to my head. Very uncomfortable. I also have very bad finger joint pain, especially my right hand which is not the bc side. My fingers joints are so swollen they pop. I am afraid my middle finger is going to get stuck, it's so bad. I really need to do something about this.

Karen

TSund · 04-01-2008, 02:07 PM

Debbie,

It would be interesting to have your doc run this test. If it comes out "negative" that means tamoxifen is not appropriate for you anyhow. It's a newish test but pretty important in mho.

TRS

dhealey · 04-01-2008, 06:18 PM

Terri, I had my first 3 month check up with my onc today and they have decided I should try femara. I agreed to try it but told her if it interfered with quality of life like the others I would go off it. I will try anything once. Thanks for the input about the test for tamoxifen.

TSund · 04-02-2008, 06:45 AM

Did you specifically pick Femara against arimadex and aromasin? I'm curious, as I suspect the onc will recommend this switch to an AI for Ruth eventually.

fauxgypsy · 04-08-2008, 10:22 PM

I am in total agreement about quality of life. So far the arimidex is not too bad. I have night sweats pretty bad and my hot flashes are worse but that is much better than phlebitis and pain to the point of not being able to use my right arm. My doctors have never mentioned anything about the test about metabolizing tamoxifen. I have decided that I will not continue these medications if they interfere too much with how I want to live my life. I may come to regret that decision later but if it comes down to enjoying life now or living through five years of severe discomfort for the hope of a longer life, I think I will choose life now. These are hard decisions for the ones who have to live with the side effects, not so hard for those who prescribe the medications. Living longer is not the most important thing from my perspective now, but if it comes down to it, I hope I don't have to make that decision. I tend to have a "full speed ahead and damn the consequences" attitude sometimes anyway. I wish I had answers but I am not sure there really are any except to do what you think is right in your circumstances. When my stepfather was very ill with lung cancer I had time to evaluate how far I would be willing to go to live longer and I came to the belief that quality of life was the most important thing. It is an easier decision to make when you are not the patient

Leslie