Hi all - i was on Ibrance / letrozal and had a good experience (no real side effects) for 6 months - had a slight increase in a couple of liver spots (very small) and plural effusion in lung... so I was moved on to Afinitor / Flas... after 1 month my liver tumors are 1/2 in size and 2 gone. Still dealing with plural effusion which my ON is not super worried about... and says it will take a while to dry up. All great news right! Well I’m not loving side effects of Afinitor - massive cold sore that won’t heal, major fatigue (like I don’t want to get out of bed) and I’m dragging all day. And zero appetite. Since I’ve lost 40 pounds in the last year (healthy eating plant based) - I don’t want to loose more! Any words of encouragement around these side effects subsiding? If things continue to clear - as I pray they do... has anyone gone back on a drug? I tolerated Ibrance so much better and I honestly feel like we moved too soon! Thoughts?
Prays and postive healing vibes to all!
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Magsue
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I am on Flaslodex and two other medicines for a trial. I also get really bad mouth sores. GelClair is what I use. My oncologist gave me a sample and it works. I am dealing with the same side effects from the trial meds. I still work and just can't seem to get my energy up. I also have zero appetite most days which doesn't help! I hope you start to feel better soon!
I suffer from cold sores too. Doctor prescribes aciclovir tablets, it's the only thing that gets on top of them. When I have them I find them painful and draining, getting rid of the coldsore might make you feel a bit better and better able to cope with the side effects. Hope you soon feel better
Hi there, I was on Affinitor along with two other drugs as part of a trial. The Affinitor gave me terrible headaches, fatigue and I lost 22 pounds. Can't say that all of those can be attributed to the Affinitor but my ONC says definitely the headaches. I was on Faslodex alone for 11 years and had no side effects at all. I had to quit the trial because of the side effects so not sure if with time the Affinitor alone will get better. I would definitely talk to my doctor. We need some quality of life.
Did your doctor prescribe any anti nausea meds? Mine has given me ondansetron and compazine. They worked best if I just made it routine to take every 4-6 hours no matter how I felt. But!! Be warned w compazine-only do one per day. I started taking that every 4-6 hours and got bad restless leg syndrome which evolved into restless body...all over twitching. I stopped when I realized it was the compazine but it still took 36 hours to get out of system.
Thanks - No I’m not nauseous at all - just so tired. Cold soars ( painful!) and mouth issues - but managing those with Zinc rinse. I know it’s not a huge issue but the fatigue is really bad. Like don’t want to get out of bed! Im hoping that subsides. Thanks!
First, "yay!" re: plant-based....you and me both! I'm really glad that this treatment is working for you, although of course I'm sorry about the side-effects! Re:; side-effects getting better, i'm sorry, but I don't know how often that happens. Re: going back...I'm a fan of that idea, but to get there you might want to say something to your doc like I said, i.e. "I'm willing to tolerate some moderate progression to see if it slows things...I promise I won't sue you! (are you in the US?). There was a thread here not too long ago about the potential wisdom of tolerating some progression, as long as it was inhibited/slowed down...sort of taking the long term view...I'd make your risk tolerance knows to your doc...and I'm with 'ya!
Each of us is different as to the side affects of different drugs. I have been on Metrizole and Ibrance since July. Horrible side affects, like you, cant get out of bed and too tired and weak to do anything. Onc went from 125 mg Ibrance down to 75 mg. No relief. I have now been off Ibrance for two weeks with little improvement and I noticed a lot of hair loss today. I think this stuff just stays in your system for a long time even though you are off it for a week or a month. And like you, on your current meds, I have to force myself to eat. No appetite at all.
No words of wisdom but I'm with you. I only lasted on ibrance and faslodex for 6 months and now I too am taking afinator and aromasin. Like you I had tolerated the earlier duo much better. I'm just sending warm thoughts from a fellow suffering and the hope that our suffering will be rewarded with no further progression and shrinkage!
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Changed from Ibrance to Afinitor
Goodbye to Ibrance . Gutted but not surprised. 
Under Reporting on Side Effects
Lost my dear mom last year October 
Afinitor/Everolimus and Tamoxifen is next :(
