Re: HELP! Cannot tolerate Hormonal Therapy...ADVICE appreciated!
 

Hi Renee, Sorry you had such a rough time. Now when you say Tamoxifen only gave you a 2% risk reduction, that means that an AI might only be slightly better than that. You already are postmenopausal, so your hormone levels aren"t too high, and you seem to eat a sensible diet. I wonder if the hormone therapy ever really was much of a safety net for you. It may not have contributed very much to your chances of survival. Perhaps you could discuss this with your doctor. Because if I'm right about this, there isn't so much need for worry.

Jacqueline

Re: HELP! Cannot tolerate Hormonal Therapy...ADVICE appreciated!
 

An estradiol level might give an idea how important this issue is. Mom had that tested maybe a year and a half ago and it was surprisingly high all considered.

Re: HELP! Cannot tolerate Hormonal Therapy...ADVICE appreciated!
 

I was like you. I didn't stop tamoxifen because I became Stage IV a few months after I began it - the doctor just said it wasn't 'working and to go off it. But I have to say that my side effects from tamox were immediate and I was not very good about taking it due to that. The QOL issues are very real.

Unfortunately, although I've been off tamoxofen since May, the side effects haven't gone away. I am in serious musculoskeltal pain constantly - I have to take oxycontin to manage it, and it doesn't work that well. I can't get out of bed easily and it feels like my knees won't hold me.

So, don't assume that going off the meds will return you to normal - if you did chemo and your ovaries were killed, as mine were, you aren't going to get estrogen anyway. And, my doctor says some bodies are much more estrogen dependent than others and however you become estrogen deprived, you are going to suffer.

However, it does seem to wax and wane. I only had mild pain for a while and now it seems to be deep, terrible pain again. I'm hoping that it will ease up. I don't know if I'm still having some natural hormonal fluctuations with what is left or what. I lost ten pounds and I was super skinny before so maybe that cause the estrogen in whatever fat I had to disappear.

Now I'm in the realm of guessing but I feel your pain. All if I have to say is being Stage IV is no picnic and if I had to live with this pain for five years to prevent it, I would.

Re: HELP! Cannot tolerate Hormonal Therapy...ADVICE appreciated!
 

I couldn't take AI's or Tamoxifen either. It made me sick to my stomach. I quit after about a month and felt much better. I do see a naturopath. He put me on a few things a couple of years ago that have helped balance my estrogen levels. I just did an estrogen test via saliva and it came back with estadiol lowered to a normal range. The doc I see said what he has me on is like an older Tamoxifen. I get no side effects.

He has me on 400 mg daily I-3-C (indole carbinol 3)
Quercetin 1000 mg daily
Grapeseed 250 mg twice a day
Green tea caps 750 mg once a day

I am weakly ER+ and PR-. You might want to check with an oncologist naturopath where you live & have them customize hormone therapy for you. Best of luck to you!

Dianne

Re: HELP! Cannot tolerate Hormonal Therapy...ADVICE appreciated!
 

"estrogen test via saliva"
Haven't heard of that..usually a blood test for estradiol. You might want to ask what marker he goes by. Did you have a before and after?

Re: HELP! Cannot tolerate Hormonal Therapy...ADVICE appreciated!
 

I'm in Canada, they do both blood and saliva. Yes I had a before and after, and it has normalized. An M.D. ran the saliva test, don't know what marker he used.

Dianne

Re: HELP! Cannot tolerate Hormonal Therapy...ADVICE appreciated!
 

I have been taking Arimidex for about one year. I don't think I've had any problems with that. I started Fosimax about 3 months ago. I have had severe joint pain , especially in my back, since I started the Fosimax. Because I have arthritis , I didn't put 2 and 2 together until recently. I take the Fosimax once a week. Everytime I take it , I have bad pain on that day. I have just learned about Prolia and wonder if anyone is having the injections and what their response has been. My last bone density test was in 2011 and showed osteopenia.