Advice needed ... Tamoxifen or AI?
 

Hello ladies,
May I get advice. I have been on Tamoxifen for about 10 weeks and have gained 15 pounds. I did not gain weight in chemotherapy. My diet is mostly raw vegetable salads, often with some form of protein or seeds. Yet, the weight kept creeping up, so two weeks ago, I joined a gym. Working out for at least 30 minutes but usually 1 hour or more every day has still shown no weight loss, but weight gain.
Last week while in for Herceptin I asked to be tested for menopause status. (My onc had said at one year's time since the start of chemo, if I did not get my cycle back, I'd be considered post-menopausal, and presumably then switched to an AI.) So in April, if my cycle does not return, I would be considered post-menopausal, but at this weight gain rate, I wanted the test and the results show post-menopause.
So oncologist has approved starting Femara and quitting the Tamoxifen.
Yet, I'm reading here that many of you tried Femara and went back to Tamoxifen. Yet it seems many of you are post-menopausal. I thought we all switch to an AI after menopause. Is that not true, or does Tamoxifen work on pre- and post-?
I'm not sure why my doc choose Femara, but given the choice, would you recommend one over the other in the family of Femara, Arimidex and Aromisin?
I'm told there will most likely be side-effects to the AI, but my thought is to go through that transition before I start a new job. So that's my hurry. Plus I am hoping the new side effects are not weight gain.
I have not taken Tamoxifen for two days now and have seen a one pound loss each day.
I have Hashimoto's (hypothyroid), but a recent test shows that my TSH is very, very low and my T4 Rx has actually been reduced to get me back in range.
Due to all this, I can only think that Tamoxifen caused the weight gain.
I've been told people can gain 10 pounds but then it levels out. Since I've gained 15# and still gaining despite a very conservative diet and a fairly rigorous work out schedule, it seems I am not "stopping at 10 pounds" nor "leveling out".
Any similar experiences or advice or warnings would be so welcome!
-Thank you!!!!

Re: Advice needed ... Tamoxifen or AI?
 

I gained 30 pounds during chemotherapy. When I went off, I worked diligently to lose the weight and was 15 pounds down before I started anastrazole (aka arimidex). Since starting the anastrazole (I was reluctant to take it so waited roughly 3 months after chemo to start) I can't lose weight to save my life, no matter how I eat. I told my oncologist that it doesn't matter if I have a diet of chocolate and cookies or a healthy vegan diet, the number on the scale doesn't fluctuate. It's very frustrating. The point here is I don't know if your weight would go up on anastrazole but losing weight isn't something I'm able to do on anastrazole.

Re: Advice needed ... Tamoxifen or AI?
 

Hi LizzElliott,

My onc started me on Arimidex right after my last round of chemo, last April. I gained weight on chemo and now more weight on Arimidex. I know it is not what you want to hear.

I eat pretty healthily and exercise nearly every day, including walking and lifting weights. I was pretty down about it myself today, but in the end, there is no way I would stop taking the Arimidex.

I talked to one of the onc nurses today and she confirmed for me that Arimidex makes it just about impossible to lose weight.

That being said, I figure all I can do is continue to watch what I eat, and exercise. There are studies out there that support exercise as being even more important to prevent recurrence than weight/diet. Which is a good thing if the pill they give you to "keep you cured" (as my onc's nurse put it at my checkup on Monday) makes you gain or at least makes it impossible to lose.

It is what it is, I guess. In the end, I want to know I'm doing everything I can to prevent a recurrence/metastasis, and if that means being unable to lose weight, there it is. Not that I am not unhappy about it. I most definitely am.

Carol Ann

Re: Advice needed ... Tamoxifen or AI?
 

Thank you Lucy and Carol Ann. Yep, not what we want to hear, but it is what it is. Ugh. Maybe I should have stuck with the "devil I know", but I'll give the Femara a try starting Monday and will share back what that devil does! :)

Re: Advice needed ... Tamoxifen or AI?
 

Yes, thanks, I am curious to see how you do with Femara!

TGIF!

Carol Ann

Re: Advice needed ... Tamoxifen or AI?
 

I must be in the minority as I lost weight on chemo I could ill afford to, then spent eight years taking Arimidex and gained nothing until four years ago when I quit smoking. I should have done it far sooner or course but better late than never, but I can honestly say any of these cancer treatments didn't cause me to gain any weight and it was only since quitting smoking and eating more I've put on and I'm now trying to lose it. I also like a glass of white wine which is full of calories too so that needs to be cut down.

My Onc agreed I should have an ooph and then take Arimidex as although my blood test showed I was post menopausal, he said I could get a period still even two years later. I was glad to do this and had no regrets and arimidex side effects were easily managed too.

Re: Advice needed ... Tamoxifen or AI?
 

Hi there,

I am not sure how old you are, but I had the same exact question. My first ONC did all those blood tests to see if I was post menopausal at 47 or 48 and they came back, and I was. Then I went to a 2nd ONC and she said that wss a useless endeavor because all of the therapy and tamoxifen would show that I was because its supposed to be shutting down your estrogen.

Now, I sm 49 and had a reoccurrence, and I am not on arimidex. It has I think caused my joints to feel like I have arthritis. She is letting me go off for 3 weeks to find out which I started this week. I am also on Herceptin and projecta so it could be that too. However, again I might have had progression so I will be having scans next week and If I have I will get TDM1. And then who knows what SE's I will have. Another day in the life.....;)

She did say tamoxifen was tried and true for 40 years and I was premenopausal when I started and I should stay in it for 5 years and then we would discuss an AI but reoccurance happened so treatment path did too. Hope this makes sense and hope things go well for you!!

Re: Advice needed ... Tamoxifen or AI?
 

My story - I did not gain weoght on Tamoxifen or Arimidex. That said, when chemo was over, I was 46 so I was automatically put on Tamoxifen. Herceptin wasn't. Available right then so I wanted to do everything possible to help myself since I had a positive node. I wanted Armidex. Got the bloodwork and it showed I was post menopausal so I started. At almost the same time, Herceptin was available - yea. Started Herceptin alone. Well, low and behold, I get my period. Onc tells me to stop Armidex and go to gyne for ultrasound. This takes 2 weeks for appointment. That ultrasound shows that I am about to ovulate again (double ovulation - one one each side). So gyne said, do you want to schedule an oophorectomy. So thats what I did. Now Anyone who knows me knows I think alot. So about a year later there is an article about Arimidex being used off label to assist in ovulation issues in premenopausal women for infertility issues. Seems it can help. I'm thinking no s... as I was double ovulating. So I think I wasn't truly quite there in menopause. My fsh/lh was there but I bet my estradiol level probably wasn't and Arimidex did its "infertility" fix on me since I wasn't quite menopausal. So my advice is make sure your estrogen panel is done. Estradiol and estrones. If they arent in the menopause range, Arimidex won't work and you wont know it for 6-8 weeks till your period suddenly comes back. What a freak show all that was.

Re: Advice needed ... Tamoxifen or AI?
 

Hi Liz,

Honestly, I think it's the menopausal state, not the drug. At least, that's my experience. I tried Tamoxifen and was so sick and depressed I could barely move. It's no exaggeration to say I felt as bad as I did on chemo. I tried AI after that and found that after 4 months, I was aching and depressed and miserable. I've been on a holiday from both drugs for about 3 months now but my ovaries are suppressed (I'm 44 and my ovarian function was screaming back after 6 months post chemo).

All that said, I've felt decent and I have always been athletic. But, I have started packing on the pounds. I've had to cut back significantly and up the exercise. If you are able to tolerate the AI, I believe that studies are showing that it actually has an improved risk reduction vs. Tamoxifen (with ovarian suppression).

Good luck.

Kathryn

Re: Advice needed ... Tamoxifen or AI?
 

Fyi, clarifying that it shows an improved recurrence reduction over Tamoxifen and ovarian suppression.

Re: Advice needed ... Tamoxifen or AI?
 

I was injected with Zoladex to shut my ovaries down and I've been on Tamoxifen. Tamoxifen alone make me gain weight but it did make it impossible to lose weight. However 4 weeks after my Zoladex shot I gained 10 lbs of water weight. And they gave me another shot last week so I'm in for an additional gain I assume. So my onc told me I can stop the shots as it is not crucial in my case since my ER levels in my tumor were low at diagnosis. But will I be able to lose the additional weight...I don't know. Hoping though.

Re: Advice needed ... Tamoxifen or AI?
 

I was on tamoxifen for 4.5 years, gained 5 pounds, lost it within a month of going off tamoxifen. Then was on Femara for 5 years and didn't gain any weight.

I retained a ton of fluid with tamoxifen and took fluid pills every other day. I HATED tamoxifen but it was the only game in town until the AI's came out.

I am back on Femara since my 2nd bout (almost 2 years) and haven't gained weight other than a few pounds due to my chocolate indulgence :-)

The menopausal state definitely contributes to weight gain. Also, I stopped smoking 7 years ago, gained 13 pounds in a year. Went on a strict diet with prepared foods (portion control) and lost the weight in 8 months

Re: Advice needed ... Tamoxifen or AI?
 

thank you all. so much to think about. i took mynfirst Femara today and am afraid to put head to pillow in fear my hair will start falling out. hopefully it's just a matter of having surfed and read too much on the internet!

Re: Advice needed ... Tamoxifen or AI?
 

Oh Lizz - you're hair isn't gong to fall out :-). I hate to blame side effects on menopause, but it also contributes to thinning hair. While estrogen is bad for many of us, it is also good stuff!.
I've been on Femara on/off for 7 years. My hair was very thick when I started and is still very thick. And I know everyone is different.

You'll be fine

Janis

Re: Advice needed ... Tamoxifen or AI?
 

Janis, If I knew where to find you I'd come and give you a huge hug right now. Thank you, thank you for the reassuring words! Truly! xo Lizz.

Re: Advice needed ... Tamoxifen or AI?
 

Anytime!
xo

Re: Advice needed ... Tamoxifen or AI?
 

Where would we be without our senses of humor??! Even though this subject is not funny, I found myself chuckling more than once at some of the dialog. I gained weight on chemo. I gained more weight on arimidex. No matter what, that scale just kept insisting I was putting on weight. I am now 30 lbs heavier than I was 10 years ago at the start of my cancer journey. I am also cancer free. I take nothing for granted anymore...seize the day...and the doughnuts!!!

Re: Advice needed ... Tamoxifen or AI?
 

I was 62 at time of diagnosis, so obviously post menopausal. When the medical oncologist was determining hormone therapy he based his decision on the results of my CYP2D6 status. As I understood him to say my results indicated that tamoxifen would be ineffective for me, therefore I was prescribed Femara (letrozole). I am curious as I have not read others mentioning this test and I thought it was pretty standard.

Re: Advice needed ... Tamoxifen or AI?
 

hi there - i am one who should be on an AI but is not, but it's because i had zero tolerance for any of them. allergic reactions, hair loss, severe bone pain. so even though after cancer i was indeed menopausal, i have been on tamoxifen for 5 yrs and will be continuing on it. i gained 20 lbs during chemo and lost all 20 and a little more while still on tamoxifen and without doing anything special to lose (i'm not into diets, but i do work out fairly regularly). i hated AI's but i hope one of them works well for you and gives you the results you need. valerie

Re: Advice needed ... Tamoxifen or AI?
 

I am so very sorry for your loss and pray your boyfriend will have good results from treatment.