I've previously posted on the side effects (debilitating for me) which began a few months ago despite taking letrozole since August 2021. I'm now on an official break after discussion with BCN six weeks ago. Four days after stopping letrozole, the awful pain in my shoulders disappeared (couldnt even turn over in bed, pain was so bad). Twelve days later, the joint pain, muscle pain and carpal tunnel syndrome ALL cleared. These are the indications that zero oestrogen is detrimental to my health, not just the cancer. Add to these symptoms...raised cholesterol, heart issues which needed monitoring last year, hair loss, insomnia, and the mindset of "What's the point?".
The Predict tool benefit for my diagnosis is 1.3%, so I'm still undecided whether to restart letrozole. I was offered tamoxifen/anastrozole but I don't see how either of these will be any better since both remove oestrogen. The fear of a recurrence is significant, letrozole reduces the risk, however it is not preventative (something I only learned recently), the cancer may recur whether I take HT or not. The thought of continued joint/muscle pain, heart problems etc. for three more years is also a significant worry. When I was given my first prescription I asked about side effects and was told "Some women have joint pain in their hands". I appreciate not everyone has serious side effects but I feel we are not given all the facts of HT.
I researched letrozole brands, the differences in the added fillers/binders to the core content between brands is an eye opener. Since my first prescription I've been given seven different brands (whichever brand chemist had in stock), so finding a brand which "suits" is near impossible. If I decide to continue on letrozole it will be for named brands on my prescription (no chance of Femara!), up till now they've only stated "Letrozole". I may also phase the pill in slowly, I shall not take it daily and if I still suffer the same symptoms as before my break then I'm done, I will not endure another three years in pain.
Sorry for the long post.
Best wishes to all x
Thanks. Barbara I will give it a try. I am working my arm more as well. Sometimes when busy I don't do it much. Or I just can't be bothered sometime. I am going to work on it for 2 wks, then have a chat with someone if it is still there. Just for reassurance, the pain or niggly breast isn't that bad. I can live with it, need a tight bra for dancing I am more concerned it might come back than anything. X Today's walk at Seafood beach.
Beautiful beach. I went for a walk too and although humid as I live in Florida it was still wonderful. Here is a picture of Honeymoon Island and we usually bike here but we live near the water so I can get a nice walk that relaxes my mind. I know what you mean about reoccurrence but all we can do is our best to reduce our risks. We celebrated our 51st wedding anniversary Saturday and I actually had a delicious porter beer. Had not had any alcohol since Christmas but we enjoyed it. My hubby went through this with me and was strong and always tells me that I will be ok. The Anastrazole has its side effects but when I take it I try to think of it is a positive thing. Keep on dancing as that always makes you smile and feel better. Take care Sabrina.
I am seeing a new medical oncologist and he ordered a test on me. I will keep you posted once I know more but here is the link for the test:
It is a cutting edge test. Hugs to you.
Barbara
Barbara
Thank you, I will ask about it when I go back. Useful to have that reassurance. Happy anniversary to you, great to have been together all that time and weathered all the change life brings. So good to have the sun back although it's still cool at present.
You have a steadying influence I love that. My son is here at present, he had a seizure on Sat and fell off the toilet. He is a big motivator for me to stay well and upbeat. I'm exhausted at the moment. Need a couple of days to switch off now.
