Anybody taken tamoxifen after 10years of arimidex?

[jaykay]

Interesting conversation. My two cents: I'd rather have wooden splints under my fingernails than go back on tamoxifen. I tolerated it for 4.5 years because there was nothing else available at the time and was delighted to move to Femara for 5 years. Total 9.5 years on anti-estrogen.

Unfortunately, I had a new primary about 4 years ago and have been back on Femara for the past 3 years. My plan is to NEVER go off Femara again unless they come up with a new drug. Granted, it's killing my bones and it would be nice if I had just a little bit of estrogen in my body but the alternative stinks. Regarding the bones - my endocrinologist is reluctant to put me on biosphosphonates since I've been on a variety over the years and new studies have found that extended use is bad for the "normal" person. I've been diagnosed with osteopenia for the past 20 years but am holding my own.

I hadn't heard that your body becomes accustomed to the drug but wouldn't switching to another AI help address that?

Becky, please let us know what your doctor says.

Janis

[caya]

I think everyone's case is different, as the docs always tell us.

I did not see anywhere in the studies where the stage at diagnosis, any nodes etc. and Her2 status had any bearing on the need to take an AI for 10 years+. In fact, in one study, Dr. Nick Turner, a BC specialist from the Institute of Cancer Research in London, specifically states "But this won't be for everyone, many will be low risk and can probably safely stop at five years (of aromatase inhibitors)."

I was stage 1, no nodes. My onc. told me at the beginning that no node involvement was a very significant (in a good way) prognostic factor. I did 2.5 years Tamox, as I was pre-menopausal when diagnosed, then 2.5 years of Femara. I went into osteoporosis from the Femara and did one infusion of Reclast to help with this. At my 5 year mark of anti-hormonals, which was July 2012, my onc. recommended I stop taking them. For me, she thought the risks of other issues would not be worth the possible very small benefit of preventing a recurrence. Of course the 10 year study figures were not out yet, and I have my annual check up with her in about 10 days and I will discuss it again with her.

But as Jacqueline points out, these are very hard drugs on your body, and if you don't really need to take them, if you are in the "low risk" group, I think this is an important consideration. Are there any figures/studies with triple+ stage 1 no nodes cases? I would be very interested in those specifics.

As many of us also say, it's a crap shoot. I'll be 10 years out this October, and I know I've done the best I can to avoid recurrence. I've lost weight (still working on losing more), I exercise more and eat better - way more veggies, lean protein, no gluten, low carb. No booze (a glass of wine maybe once a month, if that). No smoking of any kind.

Everyone needs to discuss this with their doctors, I can see the merits of staying on AIs for more than 5 years if your stats meet the criteria.

JMHO.

all the best
caya

[Jean]

Hi Becky,
I came off of my AI for 3 weeks after 10 years plus.
I needed a vacation. The past year I have experienced joint pain in my knees. I was not having any issues for 10 years and all of sudden it was like a door slammed shut.

I also had stopped taking some of vit. such as Fish Oil,
Vit D3. So during my 3 week break I went back on my
full routine again.

I felt great rather fast once I stopped the AI which surprised me. It was just about three days and the joint pain was almost all gone.

When I saw my onc. in April he suggested since the news was so good on the ten year trails and I was feeling good to continue.

I see him again in Oct. Becky please share what hear you from your onc.

Good Wishes to all.
Jean