Ibrance : I just started on ibrance... - SHARE Metastatic ...

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Kmzk profile image
Kmzk
37 Replies

I just started on ibrance 3 days ago. When did everyone begin to feel side effects?

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Kmzk profile image
Kmzk
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37 Replies
nstonerocks profile image
nstonerocks

The first cycle kicked my wbcs to the curb. Waited 2 to 3 weeks before I restarted. Since then intermittent fatigue and thin hair.

Kmzk profile image
Kmzk in reply to nstonerocks

Thank for the info! I hope you are feeling better.

in reply to Kmzk

I started on 125mg. They made my wbc to low so I was put on 100mg. I have fatigue and noticed thinning of hair after a few months. My blood bount is at 2.5 but I do need the meds.

Bluebird77 profile image
Bluebird77

I started to feel them between the second and third week. How are you feeling so far?

Kmzk profile image
Kmzk in reply to Bluebird77

So far no side effects but I’ve only takin it 3 days. Hope it stays this way but not very optimistic.

Kmzk profile image
Kmzk in reply to Bluebird77

What kind of side effects are you feeling?

Bluebird77 profile image
Bluebird77 in reply to Kmzk

I've been on Ibrance over a year. The main side effects for me are fatigue and aches and pains. During the second cycle my hair started thinning. Occasionally I get mild mouth sores. The first few cycles were the hardest and over time I think my body adjusted. Now I'm always tired but I know the third week of the cycle is the worst and I plan around it. Usually I'll have one or two days during that week when I feel almost like I have the flu and I'm mostly in bed.

Selmac profile image
Selmac

Started side effects 3rd cycle. Vomiting and nausea. Started Claritin and was fine. Only other side effect was I lost most of my hair. I was only on it 6 months. Didn't work for me.

nclui01 profile image
nclui01 in reply to Selmac

Can you please share any more details, like: are you taking Ibrance in combination with any other drugs, your age, what dosage, and why Claritin helped you? Thanks!

Selmac profile image
Selmac in reply to nclui01

Nclui01,

The ibrance gave me tons of phlegm. It was so bad I could feel it constantly dripping into my stomach. That's what was making me nauseas and vomiting. I thought it was the Ibrance. Dr put me on Clariton and it worked. I ate without ever getting nauseated.

Selmac profile image
Selmac in reply to nclui01

I also was on flasodex and xgeva.

Cherabell profile image
Cherabell

I don’t think I’ve had any really. I’m just about to finish my third round.

Newtkim1 profile image
Newtkim1

I was on it for 6 months with little to no side effects, but unfortunately, it stopped working for me. I wish you luck!

HopeinNJ profile image
HopeinNJ

Just finished my fourth month. I’m on a two week hiatus as I developed neutropenia. Will return to 125 mg. My side effects are fatigue and some mild hair thinning. Eye lashes mostly gone. I pray I continue to tolerate it. Good luck!

Kmzk profile image
Kmzk in reply to HopeinNJ

When you became neutropenia were you put in the hospital?

HopeinNJ profile image
HopeinNJ in reply to Kmzk

No I just stopped the IBRANCE for two weeks. It was discovered my “week off”, and my oncologist told me to hold it another week.

I have been on it for 21 months. My letrozole stopped working. So I now get faslodex injections. Hope they work to bring my markers back down.

Bluebird77 profile image
Bluebird77 in reply to

Hi. How did they know it was the Letrozole that stopped working and not the Ibrance?

in reply to Bluebird77

She said the letrozol was the first blocker of estrogen, then the Ibrance will block the rest. It was funny my radiologist was explaining it to me like letrozol keeps the little buggers out. Ibrance is the second guard. So when My markers were slowly going up she said let's change the letrozol to Faslodex injections. I don't think any doctor really know how it works. They just try different drugs to keep counts of what steady.When I ask about special foods or can I get gel injections for my knees she said. Barbara it is all about quality of life at this point, just eat as healthy as you can and you need the gel so you can walk pain free..

Bluebird77 profile image
Bluebird77 in reply to

That's interesting, thank you. So I wonder how they know when Ibrance fails.

in reply to Bluebird77

I have no idea, but I am going to ask her when I go next week. I feel hopeful when you hear women in this group have made it so long. But every month you worry about your markers, WBC, RBC. It is scary.

Bluebird77 profile image
Bluebird77 in reply to

Yes I agree. I am in that waiting period for my bloodwork...will get results on Tuesday. Trying not to think about it but it's always in the back of my mind!

blms profile image
blms in reply to Bluebird77

Cancer grows instead if stabilizing

blms profile image
blms in reply to Bluebird77

Cancer grows instead of stabilizing

Kimr2081 profile image
Kimr2081

I was on it for 5 cycles and had little or no side effects, but like others it didn't work for me, so onto some different. Best to you!

darlenejulien profile image
darlenejulien

I've been on Ibrance for 6 mos. my WBC is 1.2 but I feel good. My iron was very low & started a good iron (prescription) & feel much better. My Onc. has kept me on 125mg, it's working for me, so far. Last scan (Jan) showed the cancer was controlled, it's in the bone in my spine & no where else. Good luck to you

Bluebird77 profile image
Bluebird77

Wow I'm surprised Ibrance didn't work for many here. So much for all the hype. So far it's keeping me stable with the Letrozole. Hope it continues to work.

in reply to Bluebird77

As long as it working try not to worry. I like when she says after a scan or blood work no change. This time I want to hear that tumor markers are going down, even a little will make me happy.

Bluebird77 profile image
Bluebird77 in reply to

Hope you get your good news!

lashinator profile image
lashinator

I know 2 people on it for 2 years each- and no side effects for either. I'm hoping I'm in that group...It's hard not to think every ache and pain is drug related. I don't know how you tell the difference.

Kmzk profile image
Kmzk in reply to lashinator

Me neither. Been on it now for 6 days and I hurt so bad on days 3 4 and 5 and cant tell if it’s the pill or my arthritis but I hurt twice as bad?

Caboosemg profile image
Caboosemg

Hi Sweetie! I have been on Inbrance 125mg for one year with the only sided effect being recent and sporadic and that is an itching sensation on my ankles and feet about one hour after taking pill. I am easily relieved with a cortisone RX. I also get faslodex and xgeva shots every month. My doc tells me that I'm the poster child for Inbrance, all my numbers are normal and my tumers have gone. I also have not lost any hair. My nemisis is the pain coming from the authritis in my spine that the tumers left behind.

Try to stay positive and strong. Expect only your own unique experience.

I'll be praying for You!❤

Sweeten_1 profile image
Sweeten_1

Started 125mg got a mouth sore and little rash on hands. Reduced to 100 and no problems for almost 2 years stopped working along with faslodex shots. Got a little tired at times.

Cocorei profile image
Cocorei

Day 17🙀

Cocorei profile image
Cocorei

The mouth sores are killing me🙀ibrance is working but I have severe mouth. Any thoughts?

dreamboatannie profile image
dreamboatannie in reply to Cocorei

Lysine pills aloe Vera drink and the baking soda and salt have all prevented any mouth sores for me

My side effects started after a few days, nausea and extreme fatigue. My neutrophils drop low each month and I end up being three weeks waiting to get them up. My doc just reduced the strength to see if it will help my neutrophils. After three months my nausea went away but I still have extreme fatigue.

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