Week off of Ibrance: Does anyone have a... - SHARE Metastatic ...

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Week off of Ibrance

marianne88 profile image
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Does anyone have a harder time with feeling crappy and more fatigue on the week off of ibrance. I’m really struggling this week. Thanks. Marianne

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34 Replies
Barbteeth profile image
Barbteeth

Hi Marianne

I didn’t think I felt differently but have just had a two week break as having palliative radiotherapy and I feel absolutely crap...exhausted and just not interested in much

Been hardly out of the house and I’m an outdoor girl...just entertaining myself with reading and a bit of cooking...weather awful as well so no incentive to do much

I really understand

All the best

Barb xx

Hi Marianne: I have fatigue & sometimes a sense of hopelessness. Praying for improvement quickly ❤️🙏❤️🌈

Amm1 profile image
Amm1

Hi Marianne, yes I feel rotten on week off and this time was getting dizzy too. The Nurse told me the fatigue (which happens every month)was probably the Ibrance but the dizziness wasn’t. I don’t know what to think. Anne

KMBL_ profile image
KMBL_

I also had to be off two weeks this time. I just started my fifth cycle. I have to say I felt like dog poop for those two weeks. I’ve been back on for four days, and I’m still exhausted. I’ve been just pushing myself to keep going. Also, for some reason, I’ve been having headaches daily for over two weeks. Have an appointment on the 18th and will be asking about that then.

Yes! This is my week off and I didn't leave the house today. Feeling ok though, but just very fatigued. I had my monthly blood work done on Monday and they were fine. It's definitely the interruption of taking the ibrance for whatever reason.

hdhonda profile image
hdhonda

I too feel crappy my week off and sometimes part of next week. I hope you feel better very soon. Blessings, Hannah

The-artist profile image
The-artist

I do but I’m off 14 days because my platelets get so low. It takes that long for them to build back up. I start feeling pretty normal on the 7-8 day then I start back on Ibrance and the 2nd week on it I start getting really tired again. So I know what you mean. If I take my vitamins I feel a little better. I take B6, B12, D3, Calcium, zinc and magnesium. It really helps. Plus I started taking Elderberry chewys for my immune system. I think it’s helping to.

mariootsi profile image
mariootsi in reply to The-artist

My platelets go low too. I have 2 weeks off also.

Epinto profile image
Epinto in reply to mariootsi

Hi. I have been on ibrance for three and a half years and my last two blood tests showed low platelets from 206 to 96 and then to 98. Waiting for my next blood test and hoping is does not go lower. I would like a break from the ibrance as I think the spleen is getting tired, like me!

mariootsi profile image
mariootsi in reply to Epinto

I know. Sooo tired!

AvidBooklover profile image
AvidBooklover

I confess that I feel better on my week off. My digestive system feels better and I feel like I have more energy.

SunshineBoss profile image
SunshineBoss in reply to AvidBooklover

Yes I think I feel better the week off and then more tired the first week back on. 🤷‍♀️

I normally feel worse on my week off, but recently I haven’t felt so bad. It was my 7th cycle. I put it down to either getting used to it, or being away on holiday for that week.

Fingers crossed yours improves too

Clare x

lilybank profile image
lilybank

Yes I'm exhausted only picked up day 6 then went and picked up this months pills

Puppy_love profile image
Puppy_love

Yes this past week off I’ve been exhausted and nauseous the first 4 days off. I can’t sleep through the night and working full time in my career is making the exhaustion worse. I have headaches usually when I go back on my cycle and I have one eye that constantly tears which I have no clue what that is. It takes about 5 days to feel a little better but this cycle off I was not good.

Epinto profile image
Epinto in reply to Puppy_love

Both my eyes tear. It’s so annoying. My doctor says it’s dry eyes and I think some ladies on this board mention it so the ibrance contributes to it as well.

Cheza11 profile image
Cheza11 in reply to Epinto

My eyes tear also. It is the worst! When my eyes feel bad I feel really bad emotionally. It seems to effect my mental state and take me to bad places.

I have two things that seem to help. One is TheraTears made by SteriLid. It is a sensitive eyelid cleanser.

Two is a Moist Heat Compress made especially for your eyes. It works to sooth and relieve dry eyes.

I hope these things may help you as well.

Puppy_love profile image
Puppy_love in reply to Epinto

Strange thing is that it’s only my left eye. Makes no sense. At the end of week off it stops finally. But know I’m starting meds again. Also struggle with UTI’s which I’ve never had in my life.

8576 profile image
8576

I started Ibrance on Oct. 28 and yesterday I felt totally depressed and tired. I was very worried about the whole process, breast healing from radiation, etc. Not like me to get so down. This morning seems a bit better. Hope it gets better for you. Does it eventually get better? Anyone?

June S.

Lordmandy profile image
Lordmandy

End of cycle and beginning of week off are difficult. Tired, emotional, depressed. Getting out of the house halos, even when I don’t feel like it. Walking 1-2 miles helps too, but difficult to get motivation to do it. Going on 5 th year on Ibrance now

Survivornow profile image
Survivornow

I'm just the opposite! I've had to back off the Ibrance 75 mg and the Tamoxifen 10 mg because of severe joint pain and exhaustion. After just a week on this adjusted dosage every other day, I could barely get out of bed. I slept most days, had no energy to do just minor housekeeping. Sigh.

mariootsi profile image
mariootsi

I definitely feel awful on my time off of Ibrance. Sooo fatigued and kind of depressed and achy. Very lazy.

Never thought I would look forward to restarting Ibrance.

I believe our bodies are recovering from our 3 week run and it's exhausting.

Hope you feel better!

Love,

Marianne

morty87 profile image
morty87

Occasionally I will have a "low week" on my off week of Ibrance. There really is no rhyme to reason. Rest up when you can and likely the next cycle will be better. I've been on Ibrance for 22 months. I think the cooler temperatures or change in weather affect how we feel as well. Good luck!!!

Tam-56 profile image
Tam-56

Marianne,

I’m glad you asked this question because I feel validated for my feelings of impatience, irritability and down right PMS on my week off Ibrance. It starts about the third or forth day into break week. But I’m 70 so I know it’s not PMS. I’m wondering if hormone level fluctuation may be causing this or is it result fatigue?

I hope you feel your self again soon. ❤️

Mini9045 profile image
Mini9045 in reply to Tam-56

Yes I’m better now but I had two months where on my week off it was just like PMS! From smile to growl in two seconds!

I’m 64 so I know it’s not PMS.

The PMS part is gone now but after tomorrow I start my week off. I’ve been on Ibrance almost 2 years now.

It sounds like most people on her are still working. I can’t imaging having the energy to still work.

I have bone mets and my hips are awful. Every sounds like they are able to go for a walk and do much more physical things than I am.

I was diagnosed in April, 2013 BC w bone mets.

Godbeforme profile image
Godbeforme

I took ibrance for 4 mos. and when I quit because it was giving me chest pains, I felt absolutely horrible and lots of aches and pains came back that it had taken away .... I may try it again sometime at 75 mg. I still take letrozole and both wrists got so jacked up and painful, I could barely use my hands, as well as lots of lower back pain. Bone scan coming up in December and just had a DEXA scan done which showed osteopenia. I read that a DEXA scan is the only test that can determine how easily your bones will break, is this true? God bless and heal us all in Jesus name, amen! love and hugs to all!

hurricaneheather profile image
hurricaneheather

have been on Ibrance since Aug 2015; dosage lowered from 125mg to 75mg at end of 2015 or beginning of 2016? "stable" (NoEvidenceNewDisease) since Mar 2016. blood work has remained "excellent," the word used by the oncologist.

was on Ibrance 21 days, off 7 days. week three was tough, mostly due to fatigue and emotions. the first three days of the off week were still challenging, as per the aforementioned. and then the body began to be 'typical,' just in time to start the new cycle of Ibrance.

maybe 2017?, the cycle was changed to on fourteen days, off fourteen days. that third week, which is now the first off week, still presents 'the challenge(s),' and the body has more time to feel 'typical.' i love having more quality time in the 'typical' body. it has been adaptation and assimilation for me, over the years.

for me, each Ibrance cycle is different with regard to how the body reacts, and the fatigue remains a constant.

Snallygaster profile image
Snallygaster in reply to hurricaneheather

I am so encouraged that Ibrance has working since 2015. I have been on Ibrance with Letrozole since August 2018. My scans have been very positive and my blood work has been great. My Oncologist has been encouraging but hearing that Ibrance can work for 4 plus years helps give me hope for a long future.

Mini9045 profile image
Mini9045 in reply to Snallygaster

When I was diagnosed in 2013 Ibrance wasn’t prescribed yet.

Letrozole, that tiny little pill, worked wonders for 4 plus years (I also had radiation and chemo.)

I’ve been kicking for 6 3/4 years now. Hopefully you will have an even better, way better, outcome because you are treated with both!

kearnan profile image
kearnan

I could not deal with my week off either. My first cycle all I was told was that food may taste different. It was my first experience with heavy duty meds and the first two weeks were fine. And then in the 3rd week I started feeling fatigue and taking long naps and I was eager for my upcoming week off bc I wanted to be able to get things done. My week off was the worst. I barely got out of bed, it was August and hot and humid out yet I had turned off central air and I was in bed with two blankets and I was shivering so badly. It did not feel normal. I felt worse and worse until it was time to take again. I only lasted three cycles. I was shocked to read some women felt the same on it, but others like me, the hardest time was the week off. It was no quality of life for me when one week a month, I would be home bound. I got nervous during my second cycle off (this time I made sure I had groceries in the house since I live alone) again the second week off was just as bad. I completed three months and then was off it.

Gmaoftriplets profile image
Gmaoftriplets

Yes I do. I have a friend who cannot even take a small dose of Letrozole, which is what I'm on. When I off the combo for the week I am more dizzy and just have an overwhelming feeling of not well, once I'm back on the combo all I have is fatigue and otherwise I feel fine.

Rbeth profile image
Rbeth in reply to Gmaoftriplets

I take Letrozole all the time. No week off. Check with your oncologist. Reenie

Nmartinez15 profile image
Nmartinez15

That's the week that your wbc is the lowest and your body is recovering from the chemo pills.

Charlie_99 profile image
Charlie_99

Have had same experience as well. You think you should feel better right away but drugs are still in your system and you’re coming off a 21 day dose. So I always find am very fatigued that week as well.

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