Ibrance and CFS

[SunsetSeeker]

I'm on my second cycle of Ibrance with Letrozole. 125 mg the first cycle, now down to 100 mg because my neutrophils were at 0.9 at the end of the week off. Took another 10 days before starting second cycle. But the fatigue is getting debilitating. I walk for about 40 min every day and am normally active most days. But lately all I want to do is sleep. And sleep. I have a history of Chronic Fatigue Syndrome but was managing it ok before cancer treatment. Should I push myself harder or sleep like my body wants to?

[George5545]

Hi!

Not much help here but I wanted to let you know my mom is the same way! After much trial and error her onc finally decided to put her on a three week on/two week off schedule. That helped give her neutrophils time to bounce back.

She also has a lot of fatigue and will spend many days lying down. She has a bad back so any form of exercise is painful, but I have read on here that some find it helpful.

Hoping others will chime in to help, maybe we will both learn something! But you are not alone!!!

Deanna

[mariootsi]

I think we have to listen to our bodies and do what we can safely. The fatigue is so difficult. My onc gives me B12 shots which seem to help. Also, maybe you might want to talk to your onc about going down to 75mg Ibrance.

[Trusig]

I was diagnosed with MBC in February of this year. My tumors were on my Spine, one Rib and in one Lung.

In March, I began 2.5mg of Letrozole daily and Ibrance at 125mg daily for three weeks of each month. That regimen felled me during its first 3 months due primarily to the Ibrance dosage. Thus, the Letrozole dose was maintained but the Ibrance was reduced to 100mg for three weeks out of each month. Again, I experienced about every side effect Ibrance has to offer including continued fatigue and loss of energy.

As a result, beginning in September, my Ibrance dose was reduced to 75mg and I take it for two weeks out of each month BUT, I have a week break between each week of Ibrance. (Thus, one week on Ibrance/one week off, etc.) I also receive Zometa Infusions about every three months.

I am 71 years old and readily made the decision upon my diagnosis of MBC that QUALITY of Life was my priority over length of life. My medical team has respected and supported that decision .

Now completing my second month with this new regimen, I feel that my Quality of Life is far improved though it will never be what it was before this cancer. I, too, walk every day and care for and ride my horse; my days are now ones with good half-day energy for my body then tells me to take it easy. This is my new normal.

Based on Pet Scans and CT Scans prior to the start of this new regimen of medication, my metastatic cancer tumors were being slightly reduced in size and there were no new tumors. Whether that will continue under this new regimen is unknown for there is no research to support it or negate it.

I hope you may find a medicine dosage that will work better for you. I believe it is out there.

With affection, Trusig

[Lilykristymichael]

Dear Sunsetseeker

I AM NO DOCTOR BUT SOUNDS LIKE YOU MIGHT BENEFIT FROM A LOWER DOSE. I would say, if you are tired, sleep all you want. But check with your oncologist , of course, and see what she recommends. Pleasant dreams!😆

[Ntash01]

It’s your second cycle, you need to allow your body to get use to both these drugs. I couldn’t cope with 125mg and I function much better on 100mg but I don’t have CFS like you. Perhaps you should seek medical advice - fatigue is an Ibrance s/e.

From my personal experience , I would push myself to be active - we need our bodies to be as physically strong as possible (when we can) to cope with our prescribed cocktails of drugs. Sending you my best wishes.