Considering stopping Tamoxifen

Bernadette, I am a bit older than you (51) but I also felt that tamoxifen was w-r-o-n-g for me. I just felt awful taking it, I gained 30 lbs, couldn't sleep at night, and felt like you do -- just not right. I stopped taking it on my own over the Christmas holidays last year just to see how I would feel without it. What a difference. I went head to head with the onc, but since I am now menopausal (chemo did that for me, but I was on the verge) I tried the femara. Ouch! it was awful, too. The bone pain and fluid retention was overwhelming. So I quit taking that too. As of August, I am taking arimidex. I still have the hot flashes (I hate the 3am one), but the bone pain has diminished and I guess I don't feel too bad. But I am still going to take a break from this medicine over the holidays because I want to see if the hot flashes are due to the medicine or if would have them anyway as part of menopause. Every drug has side effects and these are powerful drugs, these cancer deterrents. I want to give my body a break. If the cancer comes back within a month without the drug, I feel it would probably come back anyway. My prognosis is good, my doctors pleased with my progress. Each of us must weigh the quality of life questions. Of course, you must make your own decisions regarding your care, but talk to your onc and discuss alternative therapies. There are some of us who choose to not take the drugs at all. Wishing you success with your choices and also sending ((((hugs))))

hi, I'm a bit older than you, 46, and I'll reach my 5 year mark in February. I had a mastectomy and chemo too and was on tamoxifen for 2 years then I asked my onc to switch me over to arimidex. It's much better. I have the same symptoms you had. I still have them but I blame it on my chemo brain. You only have 2 more years. Don't lose it by putting your health in question. Ask your onc to switch you to something else. Good luck. Marie

Hi I was diagnosed and had a mastectomy at 38, my onc put me on arimidex and I have hot flashes but not any pain. The hot flashes are subsiding,now I finished chemo in March. the onc also gives me a luprin shot every 3 months. So maybe this has something to with why the hot flashes are starting to go away. I had an aunt on tam. she didn't like it either. Arimidex doesn't seem to bother me. Might want to try it instead. It might work better as far as the pain goes.

inkblot said:

Hi Bernadette27:

I was hormone negative, so never took anything beyond chemo and rads.

Just wanted to encourage you to do what feels right for yourself, no matter what anyone else tells you. It's your body and your choice. Quality of life matters greatly no matter how grateful we are to just be alive.

Neither Tamoxifen nor any other drug can guarantee that we won't have a recurrence of our cancer or get a completely new cancer and I think that warrants consideration while making our choices, particularly if we're already taking a drug and experiencing difficulties. Read, research and talk at length with your oncologist regarding alternatives, or taking nothing at all. It is completely YOUR decision.

Hoping you find some measure of relief soon.

Love, light and laughter,
Ink

Hi Bernadette,

I had a mastectomy, chemo and radiation in 2003. And a year lately I decided to have another mastectomy as a precaution. I too am thinking about stopping the drug I am on, Arimidex. My wrist, ankles and now my knees have pain in them from this drug. I am now wearing magnetic braclet, ankle braclet and a ring. These are helping my wrists but not really my ankles. I find it very hard to go up and down stairs. I am only 44 years old but I sure do not feel like it. I feel like a 100 year old person. I felt better when I was going through chemo and radiation than being on this drug for only 11 months. I have gained 30 pounds and having a hard time losing that weight. I am scare to get off this drug because I don't want the cancer to come back. But I don't want to feel like this either. When I see my oncologist in a few weeks I am going talk to him about this drug.

Kathy

Kathy1108 said:

Hi Bernadette,

I had a mastectomy, chemo and radiation in 2003. And a year lately I decided to have another mastectomy as a precaution. I too am thinking about stopping the drug I am on, Arimidex. My wrist, ankles and now my knees have pain in them from this drug. I am now wearing magnetic braclet, ankle braclet and a ring. These are helping my wrists but not really my ankles. I find it very hard to go up and down stairs. I am only 44 years old but I sure do not feel like it. I feel like a 100 year old person. I felt better when I was going through chemo and radiation than being on this drug for only 11 months. I have gained 30 pounds and having a hard time losing that weight. I am scare to get off this drug because I don't want the cancer to come back. But I don't want to feel like this either. When I see my oncologist in a few weeks I am going talk to him about this drug.

Kathy

I feel like I could have written your message. I'm having a hard time with joints, knees going upstairs is next to impossible; downstairs is a little better because of gravity . I've been on tamoxifen since June, have swelling all over body and my "team" is trying to figure out what to do. I'm also putting on the weight and I've told them that this has to stop. Onward,