tamoxifen

futbolmama

So, I've been on tamoxifen for a little over a year. I am (was, want to get back to being) an athlete and have gained the most weight I have ever gained in my life (aside from pregnancies). I am engaging in exercise, but have lots of joint and muscle pain, muscle cramping, fatigue. I eat a healthy diet, whole grains, no dairy, refined sugars, etc. and still feel like s#$%!! I am thinking about ditching tamoxifen altogether. I was on Viscum Album (Iscador) during chemotherapy and a few months later, but have since stopped taking it due to lack of ability to obtain it. During chemo, I should add, I lost 15 lbs., due to highly restrictive diet (no fat, sugar, alcohol, meat, refined wheats, dairy) and a ton of muscle mass. Now I am very well marbled!! I want to start taking viscum again. I want to know if anyone else has stopped taking tamox. I am 48, have teenagers and still want to live a while. I tested negative for genetic mutation. I feel like the fear factor espoused by oncologists is so great that I can't escape it. Help!!!

bcincolorado

futbollos:  Have you tried talking to your oncologist about alternative drugs or something to help you off-set the side-effects?  Mine seems to be pretty open and concerned about how I am tolerating the medication.  I only started mine 2 months ago and the worst of it is the hot flashes so far.  I've just been cleared by my PS to start exercize and PT so hopefully I can get off some of my weight too,  But the onco was wiling to prescribe meds to help me with sleep issues, etc and was concerned about how I am doing on it.  I would start there.  Maybe a different drug might work better for you!

Claire_in_Seattle

Dear futbullos,

As mentioned above, there are alternatives to Tamoxifen, but I am also wondering if your diet could be too restrictive?  I am also athletic, and have exercised throughout chemo, so have most of my muscle mass.  I have found that I need a lot more protein, at least at this point, to maintain energy levels.

I am also wondering if you have electrolyte imbalances as you have muscle cramping.  This was no joke during AC therapy, with Gatorade helping me out more than once.

I did have to kick my metabolism back in gear a few weeks ago, but was able to do this with a long (35 mile) bicycle ride.  Unless something goes south in the next three weeks when I am done with chemo, I think I will be in fine shape for cycling season.

I think what I am trying to say is that you may need to change your eating/nutrition patters to fit your current medication.

So I am wondering if you might need to do more than one thing?  Just a thought.

Good luck getting back into shape!  It can be done.  Are you doing weight training?  I found I needed to once I went through menopause. - Claire

saskie

I actually had a reaction to the tamoxifen and couldn't eat or drink hardly a thing - i lost 15 pounds before i could make the doctors believe me it was the tamoxifen wrecking my stomach.  Had surgery and had my ovaries removed - was already menopausal and the hot flashes are maybe getting longer but they are not as often as i had them before.  I wish the doctors would have told me this was a possibility instead of throwing me on the drugs.

futbolmama

Wow, saskie, what a terrible experience with tamox.  I'm so sorry! So, are you having to take any medication now that you've had your ovaries removed? how do you feel? 

shej

Hello

I don't know where you are regarding menopause or if you had HRT.  I took light, bioidentical HRT before I was diagnosed, and now, of course, I am no longer taking HRT.  I am also taking Tamoxifen and had chemo.  I am three years out from the end of chemo and am experiencing the same sort of symptoms you are describing.  I have been to docs and done a lot research and tried a lot of things to combat the pain and fatigue.  So far, I haven't had much success.  The rheumatologist I went to said about 14% of the women taking Tamoxifen experience pain.  My experience with the aromatase inhibitors was worse.  He has not offered any solutions other than to have me try Lyrica, which made me ill.  Chemo can cause nerve damage, so that is the next thing I am going to ask about - and I am going to see a physiatrist, rather than a rheumatologist.

The reason I mentioned menopause and HRT is that I just read an article on WebMD about the fact that women who suffer from fribromyalgia experience more flares just prior to and during their periods when estrogen is low.  I don't have FM, but what was of interest is that the article stated that estrogen is a pain reducer.  Hmmm.  I thought that would be something worth pursuing with the docs along with the possible nerve damage.  Who knows if they can do anything about it?  I tried to copy the link to the WebMD article, but that doesn't seem to work in a posting.  You could probably find it by going to WebMD, if you are interested.  The title of the article is Fibromyalgia Gets Worse During Menstruation.