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Ibrance weeks off

BARBIE70 profile image
BARBIE70
ā€¢21 Replies

Hi everyone ,

Hoping your all ok and looking forward to the next few weeks wherever you live on the world šŸŒ

Can I ask if any of you girls have any withdrawal symptoms when you have you ibrance break for a week or two .

Iā€™ve recently been given 2 weeks off instead of one after being on it for 12 months and awaiting scan results on Monday šŸ¤ž

In the last 2 breaks Iā€™ve suffered extra fatigue and verylow back pain which sometimes spasms and can radiate round to my ribs .

Iā€™m great when Iā€™m on the tabs but the oncologist says itā€™s not a side effect so obviously brain into overdrive ! Itā€™s progression .

Has anyone else had anything like this please .xxxxx

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BARBIE70 profile image
BARBIE70
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BARBIE70 profile image
BARBIE70

Hi Sandra ,Thank you so much for replying ,yes I did think that it would surely be present right through so hereā€™s hoping šŸ¤ž.

I do hope you get good results and please let us know ,your such a comfort to us girls with your practical and knowledgeable relies your such a wonderful spirit .

Sending love and hugs xxxx

Red1246 profile image
Red1246

Iā€™ve been on Ibrance 100mg since September 2019. My cycle is a bit different: 3 weeks on; 3 off. I need the extra 2 weeks for my neutrophils to be high enough to begin a new cycle. This is my only side effect currently. Never feel the ā€œwithdrawalā€ you mention. Hope your scans show ā€œstableā€ and alleviate your fears. šŸ™šŸ»ā¤ļøKathleen

Merma profile image
Merma

Hi Barbie70,

Iā€™ve had several 2 week breaks from Ibrance. I donā€™t have any fatigue or pain, in fact I love that I donā€™t feel tired. After my last 2 week break, I had my blood test after one week back on Ibrance and most of my blood counts were really normal! Is it possible that something else is causing your symptoms?

Best wishes to you.

BARBIE70 profile image
BARBIE70ā€¢ in reply toMerma

I think it might be but thanks so much xx

Melpub profile image
Melpub

Good luckwith the scan! I usually feel the same or a little less tired after a week off Ibrance, but I think it would be a good idea to communicate your feelings to your oncologist.

wendle3007 profile image
wendle3007

As a couple of others have mentioned, I've had to have a 2-week break because blood levels weren't right and felt no ill effects. Your back pain could be tension due to your concerns about the scan. Maybe? Sending best wishes for good scan results.

BARBIE70 profile image
BARBIE70

Thank you so much xx

Seddy profile image
Seddy

Hello Pat,

Best of luck with your scan results.

I have been feeling fatigued in my week's break from Ibrance. I mentioned this to one of the Oncology nurses and she did not think this was unusual.

Hope this helps. xxx

I get that too and Iā€™ve been on the 2 weekly breaks for some time now as my results donā€™t bounce back up.

Iā€™ve found a McTimoney Chiropractor helps who ensures that everything is in alignment. I see him every ~ 6 weeks.

Iā€™ve also just started watching a you tube podcast which may help you itā€™s Google The Huberman pain ~ skip the first 5 mins its all about the sponsors but it seems really encouraging about how you can help help and overcome pain

BARBIE70 profile image
BARBIE70ā€¢ in reply to

Thank you so much for your reply and help ,Iā€™ll google it nowxx

KEC1965 profile image
KEC1965

Hello, I have found increasingly the week off has been really hard going with generally feeling yuck and nausea and headache. It feels like withdrawal and has only happened in the last three months - I have been on Ibrance and Faslodex for 15 cycles. This cycle my Consultant reduced my dose from 125 to 100 to see if that helped! My neutrophils were also just above 1 so she felt lower dose this time might assist! I am on week two of the four weeks and at the min feel ok. So time will tell - itā€™s all such a rollercoaster and I feel everyoneā€™s experience is different but with similar concerns . The constant worrying re scans and results doesnā€™t help either. Best wishes for your results. K x

BARBIE70 profile image
BARBIE70

Thank you so much I felt it was just me as my oncologist said nothing to do withdrawals !xx

Totheriver profile image
Totheriver

Hope all goes well with your scans. I am on 2 weeks on and 2 weeks off also because I have trouble getting my neutraphylls up. I find I do not feel the greatest at the end of the two weeks on and part of the first week off. Just extra fatigued and waves of nausea.

BARBIE70 profile image
BARBIE70

Thank you for replying sounds a little like me xxx

LadyKatarina profile image
LadyKatarina

My understanding is that Ibrance/palbociclib does not affect estrogen levels. It prevents cells from dividing, working in a totally different way. Any one else have comments?

BARBIE70 profile image
BARBIE70ā€¢ in reply toLadyKatarina

Yes thatā€™s what I thought ,itā€™s the Letrozole that suppresses your estrogenxx

LadyKatarina profile image
LadyKatarina

Doesn't it make sense that we might feel tired the week off Ibrance? Most have very low total white counts, low neutrophils, possible low platelets and red cells. Once the drug that inhibits these cells from dividing and reproducing is taken away--the body has a lot of work to do to get the counts back to normal. That is thousands of cells needing to be made!! And lots of protein needed! I would not call it "withdrawal" so I suppose your onc did not either. The first dose reduction that my onc did was putting me on a 2 weeks on and one off cycle. That really helped. And subsequent dose reductions--but the same shortened cycle. BTW--one time I had blood counts run both before and after the week off--and they were lower after the week off. My guess is it takes time for the body to get them back up. Best to you!

oilermama profile image
oilermama

I have been on Ibrance since July 2018 and have had some experiences with fatigue during the week off. And a few feelings of being a "little off". Other than that there doesn't seem to be any difference for me. I struggle more with the side effects of the anastrazole!

Discocat profile image
Discocat

Hello,Iā€™ve been on a similar targeted therapy treatment for three months. I was taking Kisqali. I had issues with my liver enzymes and I also had the same symptoms that you describe. I would get low dull aches in my lower back flanks and sometimes a hot sensation around my ribs and front abdominal area. Because my liver seemed to be affected by the medication I have been switched to Ibrance instead.

At the worst point my enzymes were more than 10x above normal levels. I found that drinking loads of water, eating very lightly and trying to stay active all helped to bring my levels down in 3 weeks and allow me to start the alternative medication.

Please donā€™t worry that this applies to you, but may be ask to have your liver function tested with your next blood tests. Mine are routinely checked every month as Iā€™m also given Zometa infusions monthly, as I have extensive bone mets.

Feeling run down on the off week of these types of treatments seems to be common as our WBC drops and the med free time is necessary to allow them to recover.

Try to stay positive and donā€™t stress out too much. I find keeping a symptom diary helps me remember how I felt at different times throughout the course of treatment so I know what to mention when I next see the oncologist.

Good luck with everything!

BARBIE70 profile image
BARBIE70

Thank you so much for your reply , itā€™s so comforting to know that Iā€™m not alone with these horrid side effects ,we donā€™t half cope with so muchšŸ„°Iā€™m waiting for my scan results and then a long chat with my oncologist instead of the 5 minute phone consultation which is all we are getting herešŸ™ˆ

Stay well and strong and sending hugs to you xxx

24siofra profile image
24siofra

Hello Barbie and everyone else out there!I have only been on Ibrance for five months. My white cells would only tolerate 75mg and fortnight on fortnight off. In my fortnight off particularly first week, I feel very fatigued too. Also get some bone pain in the rib cage which is affected. Like you I am great when I'm on Ibrance: full of energy. Don't know the answer just thought I'd share that I had the same experience. My very best wishes to you Barbie and everyone else. Gill

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