Been on Letrozole almost 4 years IDC

I will not list all the SE I had during my last 4 years on the 2 ALS I tried but it was not good. I took a 41/2 week break still had some major foot pain, sores not healed up in nose and very itchy scalp any how I am now cutting my Letrozole pill in half and taking it every other dayIF my SE come back in full I am done. I figure 4 years is bound to have helped some. My stats are: grade 1A stage 1 no node involved IDC tumor sz 1.5 oncotype 16 with a 4% reoccurrence with an Al taken 5 years I guess it would be 8% if no Al taken.I was 64 when diagnosed will be 68 in june. oh yea i am also getting prolia shots twice a year no side affects from it. i have read terrible things about when you stop prolia shots so thats my next worry..... Good luck to me😎
I am back to taking the hole pill letrozole as of April 4th, so far it’s been brutal but I must be so used to pain, dry eye,bruised feeling foot that I limp daily almost pre diabetic now what fun it is just everyday dealings with the domino effects of letrozole hard to say if I’ll make it to year 5 next June…. just saying again good luck to me!!
2025 : I have made it to the new year on letrozole(its not been easy) my last pill will be June 1st my five year date!
I plan to take it with a glass of champagne!! tho I am still trying to figure out what I will do about the prolia shots stop or continue I will post later when I figure it out.
I had my 5 year mamagram on march 24, 2025 results are good, everything with breast are fine,so I made it to breast 5 years, now I’m just trying to get to June 1st, my 5 year date on an Al , letrozole, each day I am so close to stopping, I am getting hammered with terrible side affects, my mind is fuzzy, I have sores in left side of nose plus it’s dry, I have to put Vaseline in nose on dry sore and that helps, my shoulders hurt, my left rib cage hurts and yes I’ve had it xrayed, MRI nothing , so it’s just more pain areas caused by letrozole, Im still limping on my left foot which hurt 24/7 going on two years of foot pain, my knees are stiff and hurt and my eyes are dry, I buy eye drops from Costco called refresh plus I can get 3 doses out of one of the little containers. My lower back is very painful and I have stopped the prolia shots and started alendronate once a week( actually I start it tomorrow march 29, 2025) I’m suspose to take it once a week for 2 years and it’s suspose to help me not loose to much bone density that the prolia shots helped with. I sure hope I don’t have any side affects from it.
I’ve been having some insomnia issues also, how ever i just nap during the day to rest. Im sure there’s some depression with the letrozole I feel so messed up and depressed a lot but I know it’s the medication. I’ll also be stopping the Crestor 20mgs a day since letrozole doubled my cholesterol now I’ve been predibetic, I think I’d much rather have a heart attack than become diabetic, heart issues are much easier to cope with. So good old June 1st I stop it all except the Alendronate which I stated above I’m just starting…..
Good luck to me and you !
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HI @walkingmydestiny -
Sorry you have had such a rough time with your AI. 😒
I guess the only 'good' thing is that you have managed to keep on it this long and it sounds like you are less than a year away from finishing.
I wish you well and hope your symptoms improve.
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Thanks mandy23, yes it’s been ruff to say the least. I have till next June, 1st 2025 that’s my five year date on letrozole. Hope you’re fairing well .🐕🦺🐾😎
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Walkingmydestiny.
I know the feeling well. I stopped letrezole 9 months short of 5 years. I had severe insomnia and refused sleeping pills after an allergic reaction to the first one i tried ambien..
I don't understand how scientists think 5 years is this great magic number. There is no guarantee. I had good numbers so quit . Dr retired so never went to change Ai. Doubt that would have helped cause I don't think it's drug side effects as much as it is lack of estrogen they all cause. .at any rate after 5 more years it returned. Letrezole again. No side effects of joint pain the scond time but Took 2 years before insomnia hit hard again.
This time I took anti depressant also result of no estrogen. Eliminated most pain , anxiety and insomnia. It's a crap shoot. The great unknown. Do what feels right to you.
Good luck
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