I am 59, mbc to right pleura, been on faslo, letro and max dose ibrance for a year (having failed on Ribo due to liver issues). Continuing good results , significant tumour reductions.and some disappearance..
I love my life , work 21 hours per week and exercise is my thing. However the last 2 months I've been.tired, stiff and really finding a significant drop in energy 🙃.
Wondering could this lead to a dose.reduction...neutrophils also took a significant drop last month....perhaps its just a temp blip? Curious to hear others experiences of when you might have had a reduction in ibrance dose and why, thanks so much in.advance x
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Kahe
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Hi Kahe, I had 2 dose reductions on Ibrance within the first 15 months due to low neutrophils after the 7 days off . My oncologist felt it was better to lower the dose than have to take an addl week off of Ibrance to build up the neutrophils. I will say I have less fatigue on the lower dose but I could just be used to it as i started Ibrance in November of 2019. My scans were clear or no evidence of active disease when the Ibrance dose was reduced and they have continued to be NEAD (so far !) . I'm also on faslodex . I work full time and am also 59 years old
I was reduced from 125 to 100 after about two months due to low neutrophils. I also do 3 weeks on and two weeks off. It was fine for 2 years, but now have some progression to a few bones. Not sure yet what is next.
I have had ups and downs with feeling great with Ibrance (5 yrs), but had to reduce from the 125 to the 100 mg about 6 months after my dbl mastectomy and radiation (3.5 yrs ago). Still doing well, NED for 4 yrs now. But, I started feeling bad in January, and by April it was rough. Aches, fatigue, sleepy, feet and hand numbness. Then a few open sore. Turns out it was a built up intolerance to the letrozole Switched in May and feel better than I have since Xmas. Good luck. The head game is sometimes the worst part.
Hello - might I ask what hormone blocker you were switched to. I’ve been almost two years on standard Ibrance and Letrozole and the last 3 months have been tough in terms of joints and fatigue. Not sure which med needs switching. How did you know you were intolerant of letrazole?
After my first two rounds of 125mg resulted in very low neutrophils I was reduced to 100mg (21 on 7 off) and my results now stay in range. I get tired in the last week of the pills but I know to expect it and don't plan anything which will wipe me out but also I remain active during those days and don't let it become fatigue. Any stiffness is more likely to be from the letrozole. Hopefully your oncologist will find a happy balance for you.
Also don't be concerned about a dosage reduction, if you search on here there was a post from someone who explained why a smaller dose is as effective as the highest.
I started Palbo and letrozole in March 2020, after being diagnosed denovo. I had 2 dose reductions because of low neutrophils, it was taking 3 weeks to recover. In the end we decided with my team that they would leave me on a 3 wk on, 3 wk off cycle at 75mg. My mets have reduced and I am now stable. I am active and still work, I still can get tired but it’s cop-able with, I’m 52. Good luck 🤞 x
I had my Ibrance dosage reduced from 125mg to 75mg after 1 year due to ANC levels. That was 4 years ago and as of last Petscan in January, I’m still NED. I have more energy and my hair stopped falling out and has thickened back up. Great drug for me. Hope it continues to work for a long time. Just read an article that said Prolia May prevent resistance to CDK 4/6 inhibitors. Have been on that for 6-7 years. Going to discuss with my NP at my Fulvestrant shot appointment today. Goodluck to you🙏🏻🙏🏻💪💪💕
We are of similar age and treatment plan.. I'm 52 and am two years since diagnosis de novo. I started on Kisqali but had liver complications too and have been on full dose ibrance since being switched. I also have monthly implants of Zoladex and take Letrozole daily. Since I've extensive bone mets I also do Zometa infusions. These have just been reduced to one every 3 months but were every month before.
My neutrophils have been getting lower last few months and my oncologist also mentioned the possibility of reducing dose. I've been stable with NEAD, primary tumour is now undetectable.
Went to the oncologist meeting with my husband and he looked mortified at the suggestion of changing treatment dosages 🤣....since I'm mostly feeling OK we decided to wait until next meeting...I see oncologist every 3 months and will see her in September now. I get blood checks every month at the end of the 3 week course of ibrance.
I am finding that I feel more run down in the summer months....not sure if that might be a factor for you too?? But it's really hot here in Cyprus. I try to up my water in take even more but still don't have my usual energy levels.
Hope you sort your dosage out.
There are various ways to take ibrance. Some people in USA are doing very well with 5 days on and 2 off in constant loop. If hubby wasn't so freaked I would of had no issues reducing dose....but even the oncologist said to stick to it as its working well currently😄
My Ibrance dose was dropped each time because of low ANC counts - so I was on 75 MG for a long time. Dose reductions don't make the drug less effective - experience seems to say it continues working til it doesn't regardless of dose. See if your fatigue lessens after dose reductions , if not talk to your doctor about it. Letrozole is notorious for muscle aches, stiffness, joint pain. Exercising is great for all of this if you can keep it up.Good luck, keep track of these things and talk to your doctor. 🌺
Agree with all of the other responses. Low neutrophils probably due to Ibrance, and reducing to 75 mg is fine; just as effective.
The joint pain is most likely from the letrozole. All of the AIs can have that effect. I switched from letrozole to anastrozole and still have it, just not quite as severe
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