Anyone not taking the AI's

[dhealey]

Anyone out there ER/PR positive and not taking an AI to block the estrogen? I have taken all four at one time or another and have such debilitaing side effects. Now I am not on anything and feel so unprotected. My onc wanted me to give the aromasin another try which I tried for 3 weeks. I had such pain and cramping in my feet and hands and was retaining alot of fluid in my legs, feet and hands my pc put me on lasix and celebrex for the pain. Got so bad I could not work, so I have stopped it. I feel like such a failure at taking these meds, but they make me feel so bad. Worse than the chemo. Just wondering how others fair with these drugs.

[carstell]

I am on the herceptin every 3 weeks and the Tamoxifin daily. Sorry you are having so many problems! I have really had no issues up to this point with the Tamoxifin. I have only been on it since early July. Hope you find some magic!

Cheryl

[sassy]

Debbie,

I have been taking Arimidex for almost three years. Had a lot of joint pain and stiffness until my GP put me on Lasix. It eliminated most of the problem. Which drug were you taking when you were on Lasix and how long did you take the Lasix?

[dhealey]

Sassy,
I was on the aromasin, just stopped it 3 days ago and was put on the lasix 1 week ago. Thanks .

[sassy]

I had to give the Lasix a week or two, but it really did the trick with the stiffness.

[Monica]

Hi Debbie,
I am highly ER positive, and am not taking any sort of anti-estrogen drugs. I found that tamoxifen made my neurological problems much worse and on top of that I felt miserable (worse than chemo). I tried three times. However, I must admit I am quite glad not to be on it any more. Estrogen does a lot of good stuff for your body. My onc was originally extremely concerned, but I am now reaching my five year anniversary, and all is well!

I don't see you as a failure at all. You tried, and did what was best for you.

Best,
Monica

[dhealey]

Monica, Thank you, you have made me feel so much better. I see you are almost 5 years out from diagnosis. That speaks volumes to me.

[Chelee]

Debbie, I am er & pr positive and I've had an on-going problem with my FSH & estradiol levels. I had an ooph so I could go on Femara but for some reason I'm still not menopausal by my labs.

It's a long story so I won't get into it but I just went back up to City of Hope over this same issue and it seems there is nothing anyone can do about this? I had my ooph over a year ago and I'm still producing estrogen. We even tried zoladex on top of my ooph and that didn't even do it.

I am worried about not being on one but I've done everything I can about this issue. I'm at my wits end. Being stage IIIA with positive nodes and no radiation I want to do everything I can to prevent recurrance but for now I'm not on any AI's. I am 2 yrs & 7 months out and NED. (Knock on wood.) Not sure if this helps.

Chelee

[dhealey]

Thanks Chelle, it does help knowing there are other out there not taking the AI's and still doing well. Hope you condtinue to be NED.

[mts]

DHealy,

I got off the Tamoxifen becasue of horrid side effects... My body has been wanting to go into menopause for a year or so and just last month I got my period again.

My ER+ is really low (15% positive) and I am PR- as well. I feel unprotected at such a low ER level...

What % are you ?

Maria

[Gerri]

There is an interesting clinical trial being done at City of Hope regarding mushrooms as aromatase inhibitors. A co-worker of mine is a friend of one of the investigators (Dr. Chen). He spoke with him over the weekend about this and found that the capsules being given are the equivalent of 80 grams (approx 3 oz) of mushrooms. Below are links to the article in COH newsletter and to the clinical trial info.


http://www.cityofhope.org/about/publications/eHope/2008-vol-7-num-7-july-29/Pages/a-salad-fixin-with-medical-benefits.aspx

http://www.clinicaltrials.gov/ct2/show/NCT00709020

[AlaskaAngel]

Thanks Gerri.

I don't advise anyone to do what I am doing, but will answer dhealey's question. I am Stage I, T1c (1.6 cm IDC with some DCIS), diagnosis in 2002, NED. I am not taking the extract of WBM but am eating fresh WBM daily. (I also take freshly ground flaxseed daily.)

I was HER2+++ by HercepTest, ER+ and PR+. I did CAF x 6, rads, and 1 3/4 years of tamoxifen. I have had no Herceptin. I did 2 days of Arimidex and then stopped.

AlaskaAngel

[dhealey]

To answer your question Maria, I am ER 80% pos and PR 60% pos. Quite high. I have stopped the aromasin and am still taking the lasix and celebrex, problems are slowly disapating. I truly am looking for some natural way to stop the estrogen. Alaska and Gerri I will be looking into your suggestions. The only down side of the flaxseed, my onc had discurraged this early on because it was thought to encourage estrogen production. You hear so much for and against different things it makes you dizzy trying to decide what's best. Thanks again for all those who have replied.

[Montana]

I've been off Arimidex now almost a year after taking it for 2 1/2 years. (Tried the other AIs, too). The side effects of joint and bone pain were horrible and nothing really helped.