Balance Issue? Palbociclib / Letrozole - SHARE Metastatic ...

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Balance Issue? Palbociclib / Letrozole

Hihif profile image
20 Replies

Is anyone having any balance issues?

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Hihif profile image
Hihif
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20 Replies
Burgerde profile image
Burgerde

I definitely have balance issues and am on two drugs which are in same category. I believe my issues are due to the total brain radiation I had due to brain mets but does seem worse now when you bring it up.

Hihif profile image
Hihif in reply toBurgerde

I thought that my balance issues were from chemo and radiation but I had to go off Palbociclib to take antibiotics for two weeks and my balance improved dramatically. I can walk without falling. I never noticed that my neuropathy got worse in my right foot and hands because of the fatigue.

Curious if any one else has balance issues?

Are the balance issues only with survivors who have brain Mets?

in reply toHihif

I wonder too. I had some neuropathy in fingers and toes after chemo and radiation in 2009, more balance issues since 2014 on faslodex and xgeva. Since Starting ibrance and leterzole in May and having radiation on new tumors, my balance has been awful. It did seem better when on my off week. I was driving and using a cane occasionly. Now it's walker in house and a cane at all times. No driving either. Others with changes in neuropathy since ibrance.? Thanks for bringing up the question Hi.

Hihif profile image
Hihif in reply to

Hi Jaxn,

Do you have or have you had any tumors in your brain or spine?

The reason I ask is that I’ve seen a couple of posts on another website with Palbociclib and balance but they had Mets to brain and/or spine.

Texas Princess

in reply toHihif

Tumor on my spinal cord in 2014. May I ask what other website? I didn't mention fingers worse and hands shake too. Thanks

Hihif profile image
Hihif in reply to

I’m so sorry. Praying for you! 💕💕

I also developed neurapathy in my hands and have been unable to use my thumb with index finger. It disappeared after stopping Imbrance for two weeks.

I hope this information helps you.

I googled Palbociclib neuropathy and multiple sites came up. One of them was Team Inspire for Group discussions, titled Sudden Severe Neurapathy while on Imbrance.

in reply toHihif

Thank you I will check out. I am end week one cycle 3. Hope it doesn't get too much worse. Best to you.

Hihif profile image
Hihif in reply toBurgerde

Thanks, Burgerde!😊💕👍

blms profile image
blms

Very interesting!!!

Kakoburr profile image
Kakoburr

Hi this is Karen. Balance issues can be caused by many things but please run it by your doc: s/he may want you to get an MRI. Not to worry you, but sometimes, as in my case, it can be an indication of a metastasis that is most readily addressed early. For me signs were some balance issues and suddenly more errors typing. Am still clear 2 years after surgery to remove tumors and subsequent radiation.

Hihif profile image
Hihif in reply toKakoburr

Hi Karen,

Thank you for your advise. I’ve had 3 MRI’s in the last year and I’m on a watch. I’m getting a spinal tap on Friday. I have a couple of lesions growing. One is 2cm. I’ve also developed mild white matter disease after chemo ended. I was working with a neurologist but have just learned I need to work with my oncologist and primary physician.

Thank you for sharing! 🌹

Kakoburr profile image
Kakoburr in reply toHihif

Thanks to you too, Hihif! In my experience, it was the lesions, not the meds. Once taken care of, issues with balance and coordination went away.

charlie1712 profile image
charlie1712

Yes. I’m on Ibrance 125 mg 21 days on/7 days off on a 29 day cycle. Some days my balance is affected; some days not. Had to reduce dosage to 125 mg 15 days on/ 14 days off to raise my neutrophils. I recovered somewhat and was put back on regular dosage. Re: balance-some days light headed and some days it’s worse . I’m 1-1/2 years with the Ibrance and fatigue is always present to some degree. Minor bone aches but not regular.

charlie1712 profile image
charlie1712

Sorry. Correction: 28-day cycle and 14/14 on/0ff reduced schedule. And I have bone Mets but very stable last couple of scans.

Hihif profile image
Hihif in reply tocharlie1712

Thank you for letting me know I’m not alone. Stay strong!😀

nstonerocks profile image
nstonerocks

Yes. It isn’t dramatic but I do notice I have some trouble. I thoughts it was old age or being out of shape.

Hihif profile image
Hihif in reply tonstonerocks

Me too! Stay strong! It looks like it’s may be fatigue/ neurapathy!🤔

Garnet131 profile image
Garnet131

This is interesting because now that I've been able to get back to tap dancing, I've noticed that my balance is terrible. I don't notice it much otherwise, but it's definitely bad at tap class compared to what it used to be. Hadn't thought of it being the Ibrance (just finishing 10th cycle).

Hihif profile image
Hihif

Glad to hear you are Tap dancing! 💃

I think one of the side effects is mild neurapathy that we don’t notice until we are more active.

It’s a good thing to watch from a safety standpoint.

PJBinMI profile image
PJBinMI

Balance issues the kind of thing to report to your onc today! We all need to know how best to get messages to our oncs--often by phoning their office and talking with the nurse or assistant who works closely with our onc--and some things need to reported today, some need to be reported at 2 am on Saturday morning, and some need us to go to the ER right this second. Talk with your onc about what needs immediate reporting and what can wait!

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