Week off of ibrance

[marianne88]

Has anyone ever got a answer from there doctor why the week off of ibrance is the worst. I’m so exhausted the week off and it drives me nuts. Thanks

[Tam-56]

My Onc says rebound is gradual ...it takes time to build up the blood cells... I take vitamin B12 (5000mcg fast dissolve under tongue) and folic acid (400 mcg)... helps replenish blood cells that are destroyed with chemo. Vitamins helped me with fatigue

[Mindysooty]

My understanding is that (in theory) day 1 is the best. As you go through the 21 day cycle, your white blood count gets lower/more compromised. During your 7 days off, your body tries to rebuild the wbc; which is probably why we feel so knackered during the week off. Before I started, I thought I'd be worse during week 3 but I suppose thinking about it logically, end of week 3, first half of week 4 is going to be the worst. That's what I've found anyway. That's when I feel more tired and my nose gets really sore during that time too. I'm going to ask my Onc this week if it's ok to take B12 and folic acid because I also noticed on my last bloods that my red blood cells were showing me as being anaemic which of course doesn't help.

Hope that helps .

[Francesca10]

Hi Marianne

I was like that for a while with the cycles with ibrance. It seems to be balancing out now. I know some do 7 on 2 off because of side effects on week off. Hope it gets better for you. ♥️♥️♥️

Frances

[Libra48]

Hi Marianne... I just had a call today from the specialty pharmacy that sends me the Ibrance. The pharmacist checks in about once a month to see how I am doing. Today we were discussing the "off week" only because I will be on vacation this coming week and I'm a little freaked out. I end my cycle tomorrow and begin next Thursday while I'm away. The week off is when our wbc rebuilds itself as Mindysooty mentioned. I started Ibrance 125 in March and I still can't pin point which days I feel more exhausted. I still work full-time so I feel tired everyday. I've been meaning to keep a journal. Keep track of how you are feeling so you can discuss it with your onc next time. My onc told me I need to incorporate some kind of exercise which helps with fatigue. I know many ladies here have an exercise routine and makes them feel better. I hope you feel better. Maria.

[Red71]

I’ve been trying to pay attention to when I am the most exhausted and it seems to be the week off and the first week back on. I’ve been told the week off is when our body is repairing itself. I’m sort of thinking the first week back on my body is saying, “oh no, I thought I was done with this poison!” and not reacting well at all! That week I can power through the exhaustion if I get enough sleep. I think it is somewhat different for everyone depending on how far your mets progressed before diagnosis, where and what they are, our age, and other additional medical problems.

Having something to look forward to during that week off seems to help with the exhaustion or at least the mental depression that comes with being exhausted. Good luck with finding a way to manage!

Elaine

[mariootsi]

My onc says that's normal as our body is trying to recover and build up our blood again.

[SpongebobMom]

it's like this: imagine you are a boxer. round one you are fresh, motivated & in tip top condition. as the rounds go on, you slowly lose your mojo. by round 10 you are spent. post fight your gas tank is empty & you need to rest and recover. Off week on Ibrance is the hardest week for me. body is recuperating.

[Barbteeth]

I feel the same on the off week

Barb XX

[kearnan]

I had the exact same issue. This was my first experience with a heavy duty drug. All my onco told me was that food may taste different. First two weeks, I took it and felt normal. Had an appt. after two weeks for her to see how I was doing on it. I said Wow, no side effects. This is good. I spoke too soon. About three days later I had my first bout with major fatigue. I woke up and felt like somebody had hit me with a bat during the night. I could barely get up. It was a bit scary and I continued to feel fatigue. Then my first week off was coming up and I thought Thank God. Well, that was a mistake. I felt awful, so sick on my week off. First it was August in NY, very very humid and I had central air on. I felt so cold so I shut off my central air. I could feel my apt. was getting so stuffy yet I was shivering. I had a heavy robe on and under three blankets and I was shivering so much. It was odd because I could also feel the stuffiness. I had plans for my week off but I could barely get out of bed. Taking a shower seemed impossible. I didn't have any food in the house thinking I could go shopping on my week off. It was hell. I think I laid in bed the whole week. I was a bit upset with my onco saying you did not warn me about the week off. (Realize now that she had no real idea of what the side effects might be except for food may taste different.) Once I restarted the drug again, I went back to feeling normal. Happened again on my second cycle of week off and this time I was prepared to have things in the house. Happened again on my third week off and I told her I feel like I will only have three weeks out of every month. She took me off the Ibrance. I read on some forum boards that some ladies were just like us even after being on it for a year. Some ladies said they felt no different on or off the Ibrance. I did not want to continue taking it. So now on Verzenio. 150 mgs., too many side effects, 100 mg. same thing. I am now into my fourth week on my lowest dose 50 mg. and so far this seems to be the trick. I no longer take naps. There are no weeks off and except for some minor side effects, I am 100% happier with this drug. Different drugs have totally different effects on women.

[Francesca10]

This cycle on off week feel very tired. Restarting ibrance tomorrow. Every month is bit different. Feel like I need one night 14 hours sleep. Usually when I get that I feel better. Won’t happen until the weekend since I am working full time♥️

Frances

[illini9]

I always feel the worst the last couple days of pills and the first few days of the off week. I agree with what others said about rebuilding. I recently took an extra week off to have a minor unrelated surgery and my energy rebounded like I couldn't have imagined - even that one extra week. So that told us it's definitely the Ibrance causing the fatigue and that the off week is important.

[Lovemylakie]

On my week off that is when I really rest and try not to do anything strenuous like yard work. My fatigue was so bad during the 21 day regime my onc gave me Ritalin. I can take up to 2 a day or as needed. I don't take it daily and I never take it on my off week. I can't tell you what a difference it has made. I tried all the natural/ vitamins and nothing worked, would sleep 12 hours a day. I know it's another RX but at this point I don't care. Today I took 2 and I finished mowing, edging the yard, filled bird feeders, watered all the plants, potted 3 plants, blew out the garage and driveway with the blower and then I have just been resting for the remainder of the day. Tomorrow is a light day, bookwork, ironing a few pieces so I wont take any.

Anyway that is what works for me.

Robin

[Ktraff]

Yes my mom took Ibrance and letrozole for 23 months and during that time the week she was off Ibrance was always the most difficult with fatigue..... it was very strange but as soon as she started her new cycle each month the fatigue went away for the most part ..... she just started piqray and Faslodex two weeks ago.....