Lowering ibrance to 75mg: Hi. Has... - SHARE Metastatic ...

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Lowering ibrance to 75mg

marianne88 profile image
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Hi. Has anyone seen a big difference when dr lowered ibrance from 100 to 75 with fatigue ? Thanks. Marianne

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Francesca10 profile image
Francesca10

Hi

I could not handle 125 or 100 of Ibrance’s side effects- the 75 was easier and it did hold the cancer back some. Unfortunately had to stop because of a reaction but efficacy is same if it works. The side effects are month to month but for me much more tolerable.

Good luck. Stay strong♥️

I started on 125 mg and was only on them one cycle due to low neutrophils. I’ve been on 75 mg for two cycles, started my third today. I definitely don’t feel as fatigued on this strength. It’s only been a few months. I hope it keeps up.

I have had extreme fatigue with all strengths. It does lower my neutrophils to 0.5 or lower each cycle along with my platelets so I assume that is the reason for my fatigue

Mermaiden profile image
Mermaiden

I had a few months of Ibrance 125 mg with terrible fatigue and mouth ulcers. 100 mg was an improvement but still pretty difficult and borderline neutropenia. 75mg is much more tolerable, but I still have some fatigue and mouth issues. I need to simply law down for a few hours each day to keep going. And I use magic mouthwash pretty frequently. All in all it’s very tolerable and my cancer has been NED for 20 months or so and counting! Happy with that!!!!

mariootsi profile image
mariootsi in reply toMermaiden

NEd. How wonderful!

Hi Marianne! I also got lowered to the 75mg over 6 months time period. My oncologist reassured me that 75mg is still as effective (yes, why start on 125mg, right?).

The major difference I noticed is during my week off, which seems much calmer and easier than on the higher strengths. Even though my neutrophils are still low, I feel better. My main issue right now is cognitive decline. But I think that's from the Letrozole...or maybe both.

mariootsi profile image
mariootsi in reply to

I couldn't think straight on Letrozole.

kearnan profile image
kearnan in reply to

Doctors always start with the highest dose to see how the patient will do and then works from there. That being said, on another forum board I was on, there were many women who were still on 125 mg. of Ibrance for 3 years or more and were working full-time as school teachers and even nurses. So why would they lower their dose if they are doing well on the 125 mg. Some people can't handle that dosage so than the doctor will lower it. I only lasted three months on it not bc of progression but because of how sick I felt. My week off was like being half dead. And then I did wind up with an infection that could not be cleared up with five weeks of antibiotics so wounded up having surgery. I was angry bc I knew it was bc of the Ibrance. I am so glad to be off it but I know many that started on 125 mgs. and love it because it is still working for them and they feel the same on their week off.

Shar313 profile image
Shar313

My brain fog on letrazole is terrible. Now I've added bone pain to my list. Some days are worse than others. sigh

kearnan profile image
kearnan in reply toShar313

I know how easy it is when one has a bad to day to get so despondent. But then I think about the young children who get cancer, or young teen girls who spend more time in hospital and lose their hair at an age when it is so important. Also, there are other diseases that take away a person's ability to walk, see, hear, think, and its a slow progression. So when I start having what I call a pity party for myself, I remember that there are millions of people who have it worse than us having stage iv. So we have to deal with the side effects and some days feeling better than others but for the most part, we can still be independent and walk, see and do things for ourselves and when I realize we live in a country which has some of the best medical doctors and research, I again realize how blessed I am. So when I start feeling low, I remember there are many that would love to be in our shoes and not deal with diseases that are 10x worse than ours without all the money for research and it snaps me out of it. I hope you feel better.

Shar313 profile image
Shar313

Thanks! Good thoughts to remember.

kearnan profile image
kearnan in reply toShar313

I can get very despondent also by all this and I have no support as I have no family and all the friends I had moved out of Brooklyn by I stay here because I never learned to drive. So sometimes it gets overwhelming, then I read a story and realize I don't really have it so bad compared to others and it snaps me out of it. Tomorrow cancer center. Its only once a month and yet every time I have to go again, it feels like it was just last week.

I just finished my full first round of Ibrance 75 due to having to stop the 125 and 100 mg dropping my neutrophils so quickly within the first seven days. The 75 is much more tolerable other than some random hot flashes and a lttle fatiqued. The good news is that my tumor markers have dropped significantly from being on Letrozole consistently since March so all is good. I totally agree with Kearnan above that we are blessed to be able to have options that so many other people do not have. Kath

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