Tamoxifen..a small nightmare, but are the alternatives better

@BlackWidow , No doubt it will be an extra.  I was pleased to see though that at least somebody is studying this and confirming that these side effects are real and obviously I am not the only one with these "rare and extreme" outcomes.  To be perfectly honest if there was only me to consider I probably would run the gauntlet, so to speak, and be satisfied with my decision.  Every time I spit the dummy about the situation and swear I'm never taking it again I get the, don't be so silly talk from not only the doctors but my family as well.  
xoxo
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I really am starting to wonder how much harder having had chemo makes hormone therapy. Chemo does seem to have strong impacts on bones that seem to linger long which make the added battering to them given by hormone therapy a tougher road for the body to adapt to. I’d really like to hear from people on the blog who have had these circumstances ,have managed to soldier thru them and are now coping ok.

I did not have chemo -just  lumpectomy and radiation  -have been on Letrozole/ Femara 11 months and my body - touchwood - seems to have adapted and the early joint pain , hot flushes etc seem to have abated. I do not however know about the impact on my cholesterol levels which spiked dramatically after starting hormone therapy.

The only thing I really did to help with side effects was to keep moving - a daily one hour walk sometimes 2 and a gentle stretch/ balance class twice weekly.I have been forced this past month to be sedentary because of eye surgery and was worried but thus far all seems ok still.

Maybe a different type of hormone therapy may help you given how long you have been on Tamoxifen with strong side effects.There is no guarantee that all known side effects will occur for you -in your shoes I’d try an Aromatase Inhibitor to see if it’s less debilitating but in the knowledge that there is likely to be an adaption phase to the new drug for your body for some months.

Basically if we have had Er+ breast cancer hormone therapy of some type or other it seems the only protection available atm to reduce the risk of recurrence.

https://www.urmc.rochester.edu/news/story/3935/mental-fog-with-tamoxifen-is-real-scientists-find-possible-antidote.aspx

Here's the link if anyone wants to have a read of this article.

@squirrel .  Tamoxifen just sux.

If you look at some of my posts you will see me whinging and whining about this drug.  I feel for you and I know how difficult it can be.  My onc says I can change drugs but feels if I am getting this much trouble with the Tamox the others could be worse. At least, as you know the side effects of Tamoxifen seem to reverse quickly once you stop taking it.

I don't think anyone's body likes there hormones artificially manipulated.  For those of us who are apparently on the "rare and extreme" side of things most of it is just discounted as bad luck.  Personally, I don't think any of my doctors believe the effect it can have on your brain let alone the physical side effects.  

You are right @Zoffiel.  The information we give goes no where. Unless someone here (It's being done overseas) does a "Clinical trial" on it, it won't get mentioned as a possible side effect.

Rochester University is doing a study on the toxic effects of HT on brain cells and the central nervous system. They are working (rat trial only so far) on a drug to take with the drug, wow, to stop the effects while maintaining its efficiency to do its job on the prevention of recurrence.  Unfortunately I am not a rat!

My biggest fear is somewhere down the line they find this attributes to Alzheimers or something. 
About to start my three weeks off and then give it another crack.  Fourth time lucky huh?

xoxoxo

It's a choice between the devil and the deep blue sea. I think in years to come once an effective --and profitable,-- alternative  has been developed the scientific community will look at the veritable army of cancer patients who have suffered often irreversible damage from hormone therapies and say ''The poor things, it must have been awful back then.'

Until that time arrives, we are going to be told 'This is the best we can do.' Which is true.

 I think time will also show exactly how many people on these regimes have had their lives, as regards general productivity, completely wrecked by doing the best they can to survive. That will probably happen once access to things like disability pensions because of the side effects becomes a 'thing' and someone starts to keep stats.. At the moment i don't think anyone collates the information. I've asked my oncologist, who I like and respect, what he does with the info I give him. He looked at me blankly. Does he tell the drug companies? No. Present a paper on it? No. Do he and his colleagues discuss it at a professional level? Only in general terms. Sigh.

Damned if you do, damned if you don't. This is a shit of a disease.

I took a break from Tamoxifen and felt so much better that I never went back on it so I totally understand what you mean @squirrel. 

I am seriously feeling for you, @squirrel  ..... I am 65 and have been on Letrozole for just one month & am quite achy already (having arthritis already) - I am hoping it doesn't become severe, as it will impact badly on my outdoor activities.  

I am sure that others with jump in with more helpful advice ..... Initially I thought I would be on Tamoxifen but then it was changed to Letrozole.  It is supposed to be better for those who have been thru menopause.