Why do I feel so rundown on ibrance? - SHARE Metastatic ...

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Why do I feel so rundown on ibrance?

Burtie1 profile image
11 Replies

Hello, I am a breast cancer survivor, stage 4, her2- , estrogen and progesterone positive.I was on Ibrance and letrozole for around 2 yrs. I was told the pills usually only last 9 months. Almost Depends on the person. Every time I have my labs done my white count and neutrophils were too low. Most of the time they would take me off of them for a week and I would bounce back to finish the month out. Don't hesitate to call the doctor. You don't want to end up in the hospital.

Get plenty of rest and water water water. Good luck to you. I've been going from one drug to another for the last 10 yrs

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Burtie1
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wendle3007 profile image
wendle3007

I've been on ibrance + letrozole for almost 2 years. I was told there was no end date, as long as I tolerate it and it is working then it will continue. I started on 125mg but as my bloods didn't bounce back after the 7 days off, they reduced to 100mg and I'm able to stick to the 21/7 routine. I do feel tired in the last week of the pills but I know when this will be and don't make any plans which are likely to be marred by being tired. I try to not let this get the better of me though and keep active with walking and gardening which I believe helps a lot.

You don't say if they have reduced your dose at all? There are many threads on here about dosage and women trying different routines to find one which suits

Burtie1 profile image
Burtie1

Yes I was told also as long as the pill was still working I could stay on it but I'm saying that the manufacturer says that normally on most people it only last 9 months. I was on it for I think 2 years before it stopped working.

Colacancer profile image
Colacancer

I'm in the same boat with Ibrance. Exhausted all the time , never rebounding with my WBC or Nutraphils.. so I'm in this boat. And now we've discovered matastisis. I really don't think it's the right drug for me. But they keep thinking it'll work. So I'm off to the Mayo Clinic to get some real help. Second opinion. If aim growing cancer , it ain't working. Sooo NEEEXT. IM WIPED OUT. And I have a 10 year old who's Autistic. So I'm fighting to be around for him. Pray we figure it out and put this on hold and start to SHRINK IT. but I need the right drug.. Ibrance ain't it.

Fiercelypink profile image
Fiercelypink

I don't know, but I've switched to Kisqali and my energy is much better, as well as less brain fog and no joint pain!

Jewelyn profile image
Jewelyn

Hi Bertie I’ve been taking ibrance along with fasladex injections monthly since 2018. Prior to that femara and Zometa from 2011. I understand that the current treatment is ibrance and fasladex. My current physician is at memorial Sloan Kettering. I do have fatigue and my counts have gone down in the past. If they get extreme like 1.7 I’m given a shot of nupergen which works on bone marrow. Otherwise I have been taken off it a week on occasion to allow my counts to come up by themselves. I’m usually around 2.7. Recently I’ve had other serious health conditions recently where I had to be taken off of ibrance because together cause dangerous drop in counts. I haven’t taken ibrance since august it is now almost October 1. I will be getting a PET scan this week and am hoping this doesn’t impact cancer since I’ve been in remission. Hang in there. Do what you need to do to tolerate any side effects. Good luck

Jewelyn profile image
Jewelyn

just to add to my reply. My original cancer was a stage 2 and I received the CMF treatment. 1993. Metastasis occurred 2011 with lesion in my spine on t6. I had radiation. Then put on femara. Then switched to ibrance 125mg 2018. Tolerated it ok. Just hang in there. Do what you need to do to fight.

bubblystream profile image
bubblystream

I was on Ibrance 5 yr. Loved it! No side effects. My hair did thin in the front. 😊

Dragonfly2 profile image
Dragonfly2

hi! Like many cancer meds, IBrance is a life-saving medication that is actually a poison to all fast-growing cells. This means that cancer cells die, but so do the vulnerable hair, nail, and blood cells. anemia and neutropenia result…which is why you are feeling so weak and fatigued. After two plus years of awful fatigue, I changed to a different dosing regimen..I do 5 days on IBrance, and two days off…without a needed break. Ultimately I take 20 pills every 28 days which is quite similar to the 21 days on and 7 days off. I have avoided the terrible rollercoaster of depression and fatigue from the regular dosage. There has been a study:

nature.com/articles/s41523-...

Also, search alternated dosing for IBrance on this site.

I hope this helps.

CalGal56 profile image
CalGal56 in reply to Dragonfly2

I know this is an old post, but I am on the 5/2 Ibrance plan and it has been great.

Colacancer profile image
Colacancer

I start at 125 and could barely function. Same as you too low both wbc and nutraphils.. now I'm at 75mg and still too low wbc and nutraphils. The exhaustion is deep. Well now I've had Matastisis. New tumor in my lung.. my oncologist never listened to me about Ibrance for me. I knew it was the wrong drug . They still haven't even contacted me about my results yet.. I know Ibrance works for many, but did it kick my butt. And now isn't working at all. I'm currently waiting on a call from Mayo clinic. Praying they can save my life. I have a 10 year old special needs child's child needs me around. Be blessed friend.

muzzatron profile image
muzzatron

7 years in (since recurrence of BC) 5 years post mastectomy (declined Arimadex) cancer returned. Nearly 2 years on 100mg Ibrance, Arimadex. Bad side effects but exercise, Integrative, organic etc diet and positive mental were all givens in our research. CBD with go to, ie accredited, prescribing doctor.

A CDK with an aromatase inhibitor is the standard as more effective than taken alone.

After surgery opted for private (user pays in Australia’s excellent PHS) The standard of care will be default in either system and is optimum based on international collaboration, clinical trials, statistically for MOST people. A conservative safety net.

So progression and we went all out.

Genomics testing , $AU3300, and glad we did as told us (40 pages of data!) a variant, and Tomoxafin would be ineffective due particular characteristics.

Second opinion today from Genomics consultant brilliant in field, international studies, across latest trials and was a great communicator.

Medicine is elite academically and progressively so up the ladder but they need to be good communicators or not much point.

Faslodex and Verzenio recommended. Be aware mix and max on Oncologist advice but funding stops for Ibrance here on CDK if progression.

With knowledge of variant, ATM etc may be able to tap into trial, use if fast tracked.

Still some options, new drugs in the pipeline and even a reduced Capa dosage not in standard of care. The leading practitioners tap into worldwide expertise in our case a academic in Miami.

Our hope is to hang in there as new drugs or combinations , eg EMBER 3 have a long trial period, regime.

Faslodex pain in the bottom. Oral in the lab ($EU 33000 per month?

Do your own research, Oncologist advice

Good luck.

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