Newly fatigued: Hi all - I am getting... - SHARE Metastatic ...

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Newly fatigued

bracelets1 profile image
16 Replies

Hi all - I am getting ready to begin round 7 of Ibrance and at the end of round 6 and now on my off week, I have been extremely tired - I haven't felt like this at any time since starting 125 Ibrance and 2.5 letrozole- Actually, I have been thankful for how good I have felt. But this hit me like a ton of bricks out of the blue. If I sit to read or watch tv I begin to fall asleep. I walk 2-2.5 miles at least 5-6 days per week and I am always doing chores around the house to stay busy, so I feel like I am exercising enough. I am just curious to see if most of you felt like this from the start of the meds or if it came on suddenly like I am experiencing? Thanks for all responses! This site is a blessing 💙

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Melpub profile image
Melpub

I had the exhaustion problem--I was on Ibrance for slightly over four years, and in the beginning it was as part of a clinical trial, when I had the full 125 mg dose. Wham! Too tired for ballet class, grumpy. Went off the clinical trial. When the disease came back I was put on Ibrance but only 75 mg, which worked fine. For a long time. Ask the doc if you can lower the dose.

bracelets1 profile image
bracelets1 in reply to Melpub

Thank you for your response - my blood work and appointment with doc are next week. I will definitely be bringing this up with him. But with all the responses it sounds like it is just another lovely side effect 🙃

8576 profile image
8576

I don't know if this will help. I am on Verzenio, (sister drug to Ibrance) and Tamoxifen for six months now at the lowest dose for both. Seems to be working but my hair is starting to thin and I am very sleepy all the time. Like you, if I sit down I fall asleep. I guess it is side effects.

Cheers, June S.

NShaft profile image
NShaft

Unfortunately fatigue is probably going to be a consistent side effect of Ibrance. I have noticed that I can no longer be as active as I used to be. I am going on 4 yrs with the Ibrance and Letrozole combo. I can have a good cycle with what feels like extra energy then the next cycle where I have barely any energy at all. I try to rest when I need to, especially after a busy day. It is just the nature of the beast.

bracelets1 profile image
bracelets1 in reply to NShaft

Thanks for your response NShaft - yes, I agree with your that it is probably an expected side effect - And it maybe one that comes and goes - I just hate to think of"giving in" to any side effect. But, I will remember to appreciate the days when I don't feel tired now!!!! 😊

Tolife_18 profile image
Tolife_18

Hi, I’m sorry you’re feeling so tired. It’s most likely be related to Ibrance side effects. When was your last blood work? You could be anemic and/or have low levels of neutrophils.

I suggest that you call you oncologist and let him/her know how you feel. If that’s the case, the dose of Ibrance could be adjusted to address the side effect. Don’t worry, the decreased dose are just as effective.

Wishing you all the best!

bracelets1 profile image
bracelets1 in reply to Tolife_18

Thanks for your response - my next blood work is next week - last month my blood work was great, but I guess it can change on a dime - Can't wait to see if there is a difference 😊

13plus profile image
13plus

Hi bracelets1,

I wouldn't worry about it too much, as someone else said, your energy levels may fluctuate over time. I would however check in with your doctor, perhaps your blood levels are a little off this round.

The other important thing to check is that you are keeping extremely well hydrated. I have found with these drugs that that alone can make all the difference sometimes. So if I have that 'sit and start feeling sleepy' feeling my first question to myself is, do I need more water? I'll chug a full glass if I realize I haven't drunk enough (take in consideration warmer temperatures too!) and that can really make a huge difference for me.

bracelets1 profile image
bracelets1 in reply to 13plus

Thanks for your response - I do my best to keep hydrated but I know it is always something that can be improved upon. I was never a big water drinker to begin with, but drink more since starting the meds. And blood work is next week so if there is anything abnormal I will find out soon. 😊

thyatt77 profile image
thyatt77

Hi, I've been on Ibrance and Letrozole for 1.5 years and also get tired for 3 to 4 hours after taking the combination. I recently started taking it before bedtime and that seems to help with the daytime sleepiness.

Jubilee1874 profile image
Jubilee1874

Sometimes switching the time of day you take Ibrance can lessen the side effects. Have you tried taking it in the evening? That helped me.

bracelets1 profile image
bracelets1 in reply to Jubilee1874

Hi and thanks for your response - Yes, thyatt77 mentioned the same- I take in the early evening around 5:30-6:00 - maybe switching to a little later time could do the trick. It can't hurt to try! I prefer taking meds at night anyway. 😊

Melpub profile image
Melpub

I always took Ibrance with breakfast! And those were the days for me. I had almost-normal energy though I would get breathless, despite regular workouts. But I was switched to the generic for Avastin (long word starting with "b") and my normally low blood pressure zoomed up to 150 over 100, going up or down. So that's got to be controlled. Also on Capcetabine, the generic for Xeloda, which is not wonderful for the stomach, but tolerable.

Paratroop1 profile image
Paratroop1

Yes! Fatigue for me too! I don’t normally read very many posts on this site anymore since my counselor thought it was counterintuitive to my emotional health but, that being said, I wanted to reach out to you and let you know I work part-time now Tuesday-Thursday and I am walking and moving at work all day. I then typically come home and walk three miles with my dog or I peloton…I too will fall to sleep as soon as my husband and I start to watch a show. Sucks for my husband but…I am exhausted. I also realize that I am almost 53…I think the important thing for me is that I leave enough energy to spend quality time with the most important people in my life and always get a good nights rest!

I’m on 100mg Ibrance…two weeks on and two weeks off. No Evidence of metastasis and tumor shrunk in my left breast considerably!! One year anniversary on September 3rd I was diagnosed and I am thriving! Trust your doctors and just live!! I plan on being around for a very long time!! Paratrooper

bracelets1 profile image
bracelets1 in reply to Paratroop1

Thanks so much for taking the time to reach out and happy anniversary to you!!! Sounds like you are doing very well on your meds. YAY! Yes, it does suck - especially when I was always the energizer bunny of the family. And you are right, I am 58 but never think of myself as getting older, (well... at least until I was diagnosed) ...so I guess I have to take that into account too.

I just decided to go back to work (part-time) for the holiday season - (I design jewelry for local boutiques). I also plan to be here for a long time -lots of living still to do!!! Blessings!!

kearnan profile image
kearnan

When first diagnosed, I was put on 125 mg. of Ibrance. told three weeks on and one week off. She gave me no warning. I had the extreme fatigue by day three and I could not wait for my week off. OMG. That was the worst. It was August in NY and very very humid. I had to shut off the central air, put on wool sock, heavy robe, laid in bed with three covers on me and had to actually put a towel in my mouth bc my teeth were chattering so badly I was afraid they would break. I was terrified. I live alone and was expecting that I would feel great on my week off.

I was told "they never heard of that." I lasted three months and I could not handle my week off. I never knew I could even ask for a lower dosage and she never suggested that.

I have learned so much from this board and the important thing is that sometimes a lower dose works just as well and one lady can feel great on Ibrance and others not. But they seemed to act like "i made it up" about how bad I felt on my week off.

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