Issues on Tamoxifen

Ellibubs

Hi! I am new to this discussion board and wanted to reach out and see if anyone has experienced some of the things I'm going through with Tamoxifen. I have been on Tamox for 2.5 years and have noticed two things primarily (these things have gotten progressively worse the longer I'm on Tamox): The first and most annoying is I get winded easily, especially when working out. I am a cyclist and this has really impacted me. I have gotten progressively slower and slower because I can't breathe. It's very frustrating. I've had a MUGA scan done, a chest X-ray, and a chest CT, as well as a pulmonary function test and all came back looking good. My oncologist isn't convinced this is related to Tamox, but I am almost positive it is. The second major issue I'm having is heat intolerance. Like even just being in the heat saps all my energy and I feel terrible. Forget trying to do any kind of exercise outside when it's hot or I drag ass and have zero energy/push. Has anyone experienced this? I also have stomachaches and really bad fatigue. I'd love someone to commiserate with! I feel kind of alone in this. Thank you!!

jodib

Hi! I am going to be on Tamoxifen, I am going to follow this topic. I have been wondering what I might deal with in regards to side effects. Thank you for sharing.

Ellibubs

Yes, please do! I wish you the best with your Tamoxifen treatment! Everyone is so different, and for me the side effects have progressively changed. Some have gotten better while others have appeared or have gotten worse. But at the end of the day, we are still here

Moderators

Hello Ellibubs,

Welcome to the BCO Community.

We hope you find the Forum's helpful and if you have any questions for us please send us a private message and we'll be happy to help out.

Also, you might find the following thread below helpful in finding others going through the same side effects.

Bottle o' Tamoxifen

Warm wishes,

Moderators.

Oncearunneralwaysarunner

Hi Ellibubs,

My running last summer sucked because of tamoxifen. I had the same symptoms you are describing when running, could not suck in enough air, the heat completely slowed me down. I was running much slower than what I was running just before tamoxifen and it felt so much harder. I also had other symptoms but no stomach aches.

I came off the tamoxifen to see if my symptoms would go away, most symptoms went away including the running related ones did so in my case it was the tamoxifen. Could you ask your MO to take a tamoxifen break and see if your symptoms go away?

Hope this helps.

Partyoffive

Ellibubs:I have been on tamoxifen for two years and since I'm stage 4 I won't stop taking it until it stops working for me(hopefully that will be years away) but I too have experienced heat intolerance but my biggest issues have been eye changes-my eyes are constantly dries out they are always burning and making wearing contacts almost impossible. I've had a brain ct and pictures of my optical nerves done to make sure I didn't have mets. My eye dr is positive the vision changes are from the tamoxifen but my onc says no. Just for fun I also have night sweats,cramps in almost every muscle in my body,and a period that comes and goes on a whim. All of these se's are in my mind minor and tolerable if it keeps me stable-the se's are well worth it.

Ellibubs

Thank you so much! I will definitely follow that thread as well

Ellibubs

@oncearunner..., thank you for sharing! It's a relief to know I'm not imagining these things. But I'm sorry it has impacted you too.It is frustrating when you tell your onco what is happening and they don't think it's the Tamoxifen! I did ask if I could take a Tamoxifen break and he was very uncomfortable with that idea, as my cancer was very estrogen positive. A friend of mine is an oncologist and she suggested I try getting a shot to shut down my ovaries and then trying Arimidex. I'm afraid I'll just be trading one set o se's for another.

Ellibubs

@partyoffive, I have heard that Tamoxifen can affect the eyes. It's weird that your doc doesn't think your vision changes are caused by this! I, too, have a period that comes and goes on a whim and consequently I feel like I PMS almost constantly. Ha! I am sorry you have such bad cramping. That must be really difficult. Like you said, though, the se's are worth it if it means the drug is working to prolong your health.

YoungCiaoBella

ellibubs, i have been on tamoxifen for about a month and i am also feeling weak and dizzy in the heat. My oncis also convinced thats its not the tamoxifen, but i feel terrible, hard to go do simple things like going to work, running errands.

Txoury

OMG I am so glad I am not alone and that I read this! I started Tamoxifen 3 months ago and about 2 months ago I started having horrid calf and shin cramps. I'm an avid runner so I didn't think too much about it, other than needing to up my magnesium. But now, as time has gone on I am seeing that my stamina is so "off" compared to 6 months ago, and my muscle cramps are constant. I get winded going up a flight of stairs, I haven't been clear-headed lately, and on and on. It's all just small things that I am now keying in to my start of Tamoxifen and (light bulb) it's side effects! ..... I'm in the beginning stages of researching this but I am questioning the pros and cons of taking this for 5 years when 3 months is zapping my energy and so so much more!! You/we are not alone!!! ;-)

Tomboy

Agree with Rose50, it just burns mah butt, how docs deny deny deny! For sure, tamox makes me short of breath, and so did femara. after stopping each one foe a month, hey! I could talk and walk at the same time again.

MrsDarcy

1.5 years on tamoxifen. Often out of breath on stairs and truly can not tolerarte the heat. Never once thought it could be tamox.. surprise surprise

Austinjewlz2

Yes yes and yes. I have been on it three years now and just had what I would call heat exhaustion today. I'm glad to know I am not crazy!

Super bummed about all of the side effects of this Med but so far everything is manageable. The doctor said if I quit taking it altogether (without a replacement) my chance of recurrence doubles. Has anyone else been told this?

Yeah, my Onc is a freaking Tamoxifen cheerleader. I suddenly have fatty liver and she says Tamoxifen has nothing to do with it even though I have a friend whose Onc says yes, it does.

Sometimes I'm not sure what to believe-but my Onc is well respected so.....indunno

Artista928

Tamox can reduce recurrence/mets by 50%.