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Ibrance side effects

Stage4Gir profile image
29 Replies

Does anyone know if the side effects of Ibrance get better or worse the longer you take it? I’m only on 2nd cycle and feel so weak.

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Stage4Gir profile image
Stage4Gir
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29 Replies
Zebra2018 profile image
Zebra2018

It gets better, until your body gets used to it. Mine got better with time.

Glas0824 profile image
Glas0824 in reply toZebra2018

Hi long did it take to settle down? I did three cycles and have taken a break already ! Was so weak.

Barbteeth profile image
Barbteeth

It gets better so hang in there

I used to need naps sometimes but never do now and I can walk more

My main problem is constant pain due to bone mets which is horrible...I would rather feel weak than have this

Barb xx

LJ1004 profile image
LJ1004 in reply toBarbteeth

I have been on Ibrance and Anastrozole for 12 months. No side effects noticed until I saw you have pain from bone mets. I had mets to hip and L5. Have had bad bone pain but thought that was from my infusions of Zometa for bone strength. Hmm, maybe I am blaming the wrong drug, or it is both?

Barbteeth profile image
Barbteeth in reply toLJ1004

Who knows???.. I’m on Ibrance and letrazole and a lot of ladies on here have bone pain from letrazole so it’s very difficult to know what is the culprit

All the best

Barb xx

Barbteeth profile image
Barbteeth in reply toLJ1004

Oh and I have a monthly injection of denosumab so could even be that one!!

Barb xx

Timtam56 profile image
Timtam56 in reply toBarbteeth

I reckon that really gets me barb. The Denocumab.

Red71 profile image
Red71 in reply toLJ1004

I’m also on drugs for my bone pain as well as Ibrance, Letrozol, and Zometa. I was on Letrozol with my original breast cancer and it didn’t give me any problems except dry skin. My bone pain got much worse when I got my compressed back fractures and was diagnosed with bone mets at that time. I had some before but was chalking it up to aging...I’m 71. I would definitely talk to your doctor to see if he can help you figure it out. Being comfortable enough to carry out day to day activities is important! Elaine

Southside25 profile image
Southside25

It took a while for side effects to kick in - at least a couple of months for me. GI issues, hair loss, nothing extreme and, oddly, not consistent. I'd feel fine for days and then get bad gut pain, constipation or the runs. I've reduced from 125 to 75mg - I've read in several places that dosage doesn't seem to matter. If Ibrance works, it works regardless of dose. My hair stopped falling out, but has gone from very, very curly to almost stick straight. Dry skin, nails, joint stiffness (onc. says that's probably more the letrozole than the Ibrance), and loss of sense of taste, but again, it could be worse. But if the drug is working for you, don't be alarmed at the prospect of reducing dosage if you think you need to. Reduced dose has improved my side effects..

Merma profile image
Merma

I've been on Ibrance for 18 months. I've found that I have gotten used to being anemic. By that I mean, I am more aware of using up my energy and plan accordingly. For instance, I know that I cannot do a strenuous workout on the days that I work because as a 3rd grade teacher, I use up a lot of energy. Overtime, my blood counts have gotten a little worse. I don't know if the supplements I have been taking are helping. My doctor says maybe they are because I could be worse. So far, he says I'm doing really well.

Glas0824 profile image
Glas0824 in reply toMerma

Can I ask what supplements you take?

Merma profile image
Merma in reply toGlas0824

A gazillion of them: Marrow Plus by Health Concerns, BroccoProtect, MitoPCC, Vitamin D, and Berberine Synergy by Designs for Health, Niacel-250 by Thorne, Breast Defend Professional & Myroceutics Immune Max by Clinical Synergy.

I just started taking Detox Antiox and Milk Thistle by Designs for Health. I am taking these for the week off from Ibrance to hopefully build up my blood counts.

I am seeing an alternative medicine doctor for acupunture and wellness. She works with many of my onc's patients.

Merma profile image
Merma in reply toMerma

Oh yeah, I forgot Meletonin too.

Glas0824 profile image
Glas0824 in reply toMerma

Thank you - at the moment it’s mainly lots of juicing and I take Vit B12 which makes a difference. I’m only about to start 4th cycle of Ibrance so I didn’t want to add too much into the mix all at once. I asked to be referred to a homeopath to help too.

I’m a teacher too , so energy levels are important!

Merma profile image
Merma in reply toGlas0824

Watch your B12. Mine was too high.

Glas0824 profile image
Glas0824 in reply toMerma

What was the side effects of that?

Merma profile image
Merma in reply toGlas0824

My b12 levels were very high above parameters. My dr told to stop taking them. They did not give me more energy.

morty87 profile image
morty87

I've been on Ibrance for 16 mos and I feel as though my body has gotten used to it. I'm still anemic but my oncologist put me on a new multivitamin - Thera M and I have felt the world of difference. We just returned from a free trip to Hawaii and I did remarkably well. Those ferry rides got the best of me - but that would have happened without MBC. Hang in there. It's the new normal and simply something we have to do to survive. I have had good results and hope when I go for scans in 2 weeks that I can continue to say that it is still working.

mariootsi profile image
mariootsi in reply tomorty87

Good luck with your scan.

morty87 profile image
morty87 in reply tomariootsi

Thank you!!!

Mootzi profile image
Mootzi in reply tomorty87

How wonderful you went to Hawaii. That’s on my bucket list. Please tell me the type of Thera M you take. I notice there are several to choose from. Thank you.

equavel profile image
equavel

For me it has gotten better

I have been in Ibrance 1.5 years

I think that I have simply gotten used to a new way of feeling

On a few occasions I have even allowed myself to have a nap

I swim at least 3 km a week and have a puppy that I walk every day

I am 75 and working 15 hrs a week

I have had to wait an extra week to begin the Ibrance cycle on occasion bc of low neutrophils

I think that the emotional aspect of a metastatic diagnosis and all the fears that accompany it contributed to my earlier difficulties with Ibrance

I re- established contact with my analyst (therapist) and see him weekly...indispensable for me because it is the only space where I can talk about anything ... about things I might not want to burden my friends with

Ps I lost quite a bit of hair and recently got a hair piece... lightweight not warm and everyone comments on how they like my new hairdo

Survivornow profile image
Survivornow

I'm doing 7 days on, 7 days off for the 3rd cycle after doing 21 days on and 7 off for several cycles. Losing weight like crazy (appetite is up and down), sleepy nauseated and weak, rib and joint pain the first 4 days on meds and then I gradually get more energy and feel better after that. I've seen posts where it eventually gets better, but my feeling is that once that occurs, the meds aren't working as well. My PET Scan was incredibly amazing after just 4 months of on and off meds while having the toughest time with the side effects of the meds.

mariootsi profile image
mariootsi

I find each month.... Each day is different.

Francesca10 profile image
Francesca10

I felt weak on 125. Once dose went to 75 I am doing much better with it with side effects.

Glas0824 profile image
Glas0824

I take 2000 and like you found it really helpful - energy levels much better

Rbeth profile image
Rbeth

I take Ibrance with my evening meal. I set my watch to remind me. I take letrozole before bed as it makes me sleepy.

My oncologist said take Ibrance the same time but can be within a 4 hour time window. Good luck. It’s like having a second job. I go for another Pet Scan Wednesday. Prayers for us all.

caw517 profile image
caw517

I would agree with some that your body gets used to it for about a year. But I am now on 100 mg. for 3 years-- and feeling the side effects-- low counts and fatigue worse than ever. But hey-- I it's still working so I am happy.

My side effects have stayed the same the last 14 months. Super fatigued but no nausea or other symptoms besides low neutrophils. It affects each of us differently. Ask your doctor about your side effects and maybe there is some thing that will help you

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