Tamoxifen and breathlessness

Hi Djuna

I don't have the experience you're looking for but noticed that your post hadn't had any replies yet. This is possibly because this is such an active group that it has fallen off the first page before someone with the right experience has seen it. Replying to you will 'bump' it back to the top of the discussion list where it'll hopefully be easier to spot.

If you haven't already tried this if you type 'tamoxifen' into the search bar at the top of the page you'll find lots of previous posts on this particular drug. You could have a look through some of them to see if others have experienced this breathlessness as well.

While you're waiting for replies it would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Thanks for doing this latchbrook, it's much appreciated. I've done as you advised and updated my profile, and also tried a site-search for Tamoxifen. Can't seem to find anything relating to breathlessness, although I've seen mentions in other places. I must admit it's kind-of got to the point where if I get any symptoms of anything, I Google "can Tamoxifen cause X?" and then follow it up through a reputable site if I get any hits!

No problem Djuna, although I'm sorry you couldn't find any posts which mention breathlessness.

I agree that not all googling is bad. I think that as long as you do what you do then you shouldn't end up going down rabbit holes full of scare stories.

Another thought is to post your question in the ask a nurse section of the online community and one of the specialist nurses will respond within 3 working days. Clicking on the link I've created will take you there if you wanted to do this.

x

Hi djuna I was on tamoxifen for 4 months I started them dec 20 and in Jan 21 I started to get breathless and started to get palpitations after a few weeks of this getting worse I was diagnosed with severe heart failure I felt ok and couldn't believe what I was told as I had been through enough by then but now I'm on meds for this I feel much better and I am waiting for a scan to check on my progress as they say that my medication for my heart can actually put my heart into the moderate or even mild category, I must say I didn't have any problems before starting tamoxifen and I had breast cancer diagnosis in Feb 20 then had lumpectomy, 5 rounds if chemo ,radiotherapy and had been on letrozol before starting tamoxifen and had no problems with my heart or breathlessness but I am certain that tamoxifen was the cause as I was told to stop it I am currently not on any hormone therapy but I have my oncology appointment soon and will find out where I go from here, i hope this doesn't scare you as we all should be proud of ourselves for fighting the way we do especially through a pandemic hope we all have a better 2022 xx

Hi 

Thanks for this, and I'm sorry to hear you've been having problems too. I ended up being taken off tamoxifen in October as I had a DVT, and I'm still having problems with my breathing so I'm guessing in my case they weren't connected after all. Having been referred to the respiratory team we so far know that it's not Covid, and not the cancer spreading, but still not what it is! Have more tests lined up for the New Year so fingers crossed

Hi, did you ever get to the bottom of your breathlessness? I'm suffering with this too, asthmatic also but having Herceptin injections until December and have just started taking Anastrozole.

Its only happening when I'm walking up hill and I fine myself struggling and having to use my inhaler- very frustrating as walking is my favourite type of exercise.

Hi

i suffer terrible with breathlessness. However I was diagnosed last year with mild bronchiectasis. Due to a chest infection years before.  I was discharged as it was manageable without any inhalers. 
but since I have been diagnosed with breast cancer my breathing and tickly throat has become much worse. I mentioned this and they say this could be a flare up causing the tickle due to stress. I’ve not started any medication as yet 

x 

Its so annoying.

I'm convinced my cancer has come back but know this isn't probably true as I'm only just out of active treatment. 

Hi

No luck as yet - we've established it's not Covid and it's not lung cancer, and now I'm waiting to see the consultant to get the results of the lung function tests I had about 6 weeks ago. And God knows how long that will be, so I'll just have to wait and see! Fortunately I don't notice it bothering me day to day too much, but I suppose that could be because I've been living with it so long that I've adjusted a bit.

Hope you get to the bottom of yours.

Djuna 

I've got an appointment on the 20th for an asthma check and I've started doing my peak flow and recording it on a graph as I know the nurse will tell me to fill it in for 7 days. I know somethings not right so don't need to faff about for another week after I've seen them.

Im coughing quite a bit and there has been some mucous too that I can feel. It's very strange. 

Hope yours sorts itself