Taking Tamoxifen

Ellie44

I have never written anything on any message board, but then again I've never had breast cancer before either.  I started taking Tamoxifen 5 weeks ago. Well the first week I was sick to my stomach everyday that I ended up at my Drs. office, bawling my eyes out, of course, thinking something was wrong.  That's when I started taking it at night and things started to get a little better. And I mean a little better.  Well last week it felt like my throat was closing up.  So I go to the walk in clinic thinking it was an allergic reaction to something I ate, which had never happened before.  It wasn't an allergic reaction. So once again I go to my Drs.  She thinks its silent reflux.  This has not been the greatest experience, didn't think it would be,  I worry everyday about the side effects of tamoxifen, mostly the blood clots you could get.  I know the chances are slim but its on my mind a lot.  Has anyone had some of these experiences.  Does it get any better.  In between the first week and the 5th week I've had some muscle aches also, just things I've never had before.  I guess that's all.  Thanks for taking the time to listen to me. Ellie

farmerlucy

Hi Ellie - Ah yes - the mysterious throat closing. I had that really bad for several months post dx. I initially tried tamoxifen in April, quit ten days later and then did not try again for a year. The throat closing started up in June. It scared me to dealth. Sometimes I thought I would choke. I also had burning in my throat (that I think was aggravated by sugar free gum). My docs thought I was crazy. Finally one doc said it was the anxiety. Seems he was right. The further away I got from dx, the less often it appeared. Even now when I get stressed I can feel it happening, but I know what is going on so I don't worry about it.  That summer my PCP basically ordered me to stay on klonopin and a lose dose antidepressant for a year. The fear and anxiety we feel with this stuff is like no other. I blamed tamoxifen for so many things that first time I tried. The second time I tried I only had garden variety SE lilke hot flashes and the initial nausea. Since my dx I've come to realize that tamoxifen is a wonder drug, and I am grateful for it every time I take. But that doesn't mean I like taking it . . . 

farmerlucy

I also went to my gastroenterologist, for what I call "fire breathing dragon syndrome" My throat would burn so bad my eyes would water and my nose would burn. I told him "when I think unpleasant thoughts my throat burns:". He looked at me like I needed to be committed. It is funny now, but it sure wasn't then. 

Ellie44

My throat didnt burn but the middle of my chest did. I told my radioligist and he'd never heard of that happening. My pcp gave me ranitidine(zantac).   it's been a week and it hasnt happened again.  its an aweful feeling isnt it.  Some of the drs do look at you like your crazy. I've been preety lucky with my reg doctor. She seems to honestly want to help me get better.

Monis

One symptom of anxiety, which I've had, is "globulus hystericus", which feels like there's something stuck in your throat.  There's actually nothing there, just feels like your throat is constricting.  Bugs me from time to time, but now that I know what it is I can get past it and relax.

Ellie44

That's the thing, once you know what something is, its not so bad.  Thanks

Golden01

My MO prescribed 10 mg Tamoxifen, twice a day, as he feels some women have fewer symptoms initially that way. I've stuck with that and seems to work for me. 

farmerlucy

Monis - Thanks so much for telling us the name. I'm glad to know what I was feeling was not fake, or imagined, or crazy.

corky60

After less than a month on tamoxifen I developed silent reflux.  Started with burping then progressed to a sore throat and cough.  I ended up taking Prilosec twice per day and that helped.  After a couple of months I was able to lower the Prilosec to once per day.  Now that I've quit tamoxifen I hope to be able to eliminate Prilosec.  My worse SEs from tamoxifen were insomnia and macular degeneration in one eye.  My MO said that macular degeneration is a rare SE but that it happens.  There is no cure and I don't want it to happen to my other eye.  I had many other SEs as well.  My MO says I am highly sensitive to hormonal manipulation.

Twinmar

I had the throat thing as well.   I felt like I was hoarse all the time and sometimes had difficulty swallowing - or felt like food was stuck.   I lost my 'singing' voice - couldn't reach any high registers (I'm only a shower singer) I didn't know if it was from the Tamoxifen or from the radiation.  I was diagnosed with reflux as well but I'd never had anything like that before until I started the Tamoxifen.  I am no longer on the drug.  Some days I still have problems with my throat but it is much better than when I first started taking the pill.   The only side effects my Onc mentioned when I started were blood clots, vision problems, hot flashes or endrometrial problems; however she failed to mention the bleeding gums, thinning hair, bad dreams, twitching muscles etc.  I did lose weight on it and the side effects didn't start until I had taken it about 6 months.   I stopped after a year.   My onc left her practice and I was assigned a new one whom I saw 6 months after stopping the Tamoxifen.   She told me she was glad I had stopped because she thinks only people with invasive breast cancer should take it and it was 'overload' for me.   I think every doctor has a different opinion.  Good luck.

Fitbit

I just began Tamoxifen a few weeks ago and have had horrible cramps every day and stomach pain. It feels like I am about to start my period but I don't. I also have had some headaches, hot flashes and fluid retention and achy legs.. I'm wondering if the stomach pain/nausea and headaches will eventually go away? I sure hope so! It is not fun feeling sick every day when you aren't, its the med causing it.

Ellie44

Thank you everyone that has replied. Its good to know i'm not the only one going through this. my onc told me the side effects, was told i would probably only get hot flashes. I dont think ive gotten one yet. I sure do hope everyone starts to feel better.  I have to say, i hope it gets better, they want me on it for 5 years.

KBeee

I have had horrible heartburn from Tamoxifen.  The only other time in my life I had it was during chemo.  I tried Zantac, which worked during chemo, but it did not work.  I tried Prilosec, but it made me so dizzy, I had to bury my head for hours...never experienced anything like it and will never take it again.  I asked MO and all he did was roll his eyes and say, "you feel better tan you did during chemo, don't you?". He is now my ex-MO...will never go back.  I still have the hear urn and nausea every day.  I do not have the throat closing.  If anyone has found things that work, make sure to post them.  I know Tagamet is not allowed with Tamoxifen...wondering what other options there are...medicines...or non-medicines.

corky60

An update to reflux with tamoxifen: After a month off tamoxifen I was able to stop Prilosec completely.  Just as suspected, it really was the tamoxifen that caused reflux.

Morwenna

I find omeprazole (20mg) very effective. I have tried stopping it, or only taking it occasionally, but really, if I just woman-up and take the damn thing daily I can eat pretty much what I like without getting heartburn, reflux at night, or laryngeal spasms (which used to scare the crap outta me until I learned to relax and not try to cough until my throat relaxed!)