Does anyone experience long term Ibrance side effects?

[SabaAK]

Hi ladies! My mom’s PCR test came back negative. She has been in London for 5 days and no symptoms yet.

I do have different question. My mom has been on Ibrance for 7 months now. Last scan in July showed improvement and the most recent blood work was fine. But it’s been a month since she doesn’t have that much appetite,her hair is thinning a lot,she got dard circles around her eyes,she lost a lil bit weight,she became sensitive to tastes and smells. When she started Ibrance she was tolerating that well,she was fresh and appetite was good,but she says as time passes she feels more and more side effects. Every time I’m asking her about her well-being her response “stop asking me every time, it bothers me”. I do understand that Ibrance is like chemo and it’s very heavy medication. Does anyone else have long term side effects and is it normal??

Thank you

Saba

[Merma]

Hi there,After about 2 and a half years of being on the 125 dose, I had a bunch of side effects, but the worst was that my blood counts weren’t recovering on the week off. So my dr changed me to the 100 mg and mostly I’ve been doing fine, but since my wbc were very low and I’ve been otherwise stable and ned per the scans, he had me take an extra week off.

Basically, the longer you’re on it, the more chances you’ll develop more reactions (per my doctor). Hope this helps.

[SabaAK in reply to Merma]

Thank you so much:)Her doctor reduced her dose as well to 100 mg and her wbc is stable now it’s 2.7. But she was very optimistic at the beginning of the treatment. I believe as she sees more changes in her appearance and internal of course,like decreased appetite,upset stomach hair thinning and bunch of stuff that she probably not telling me,it puts her down,and I’m getting anxious and scared. Yesterday I asked her again what’s wrong,why are you so quiet all the time,you are not feeling well mom ? She got angry again and said do you think that I don’t have any reason for not being ok? I do have cancer,is there anything worst than that? She became very irritated and nervous:((

[U2Rocks in reply to SabaAK]

My primary care doctor put me on an antidepressant because she said cancer is a lot to deal with. My oncologist said sometimes Ibrance stops working after a few years but she has other drugs. Lately I have more concern about that. My hair has thinned and I have lost some weight. This past week my WBC was lower so I’m off for a bit longer so numbers can improve. It is a day to day disease and some days I’m emotionally better then others. My family gives me pep talks about how much worse it could be right now and that I’m still alive and doing ok. Honestly it is a long and personal road we are on and I feel lonely at times. That’s when I distract myself and keep busy. I will pray for her as we are all in this together ❤️

[AvidBooklover in reply to U2Rocks]

I saw your note and was going to suggest the same thing...an antidepressant. Worrying definitely takes a toll! Been dealing with this with my otherwise very healthy 92 year old dad. He is so worried about my mom, who is failing cognitively, that he has lots of anxiety. Now have him on .25 of a generic Xanax twice a day; once at bedtime, and he is sleeping 8 hours instead of 2...and is less stressed DURING the day. He is very very stubborn and this took forever to even get to this point!!

[SabaAK in reply to AvidBooklover]

My mom has issues with sleep,even with Xanax she’s not sleeping well. She has insomnia, I think that’s one of the main reasons of her problem.

[AvidBooklover in reply to SabaAK]

Definitely tell the doctor...there is lots to do for insomnia!

[U2Rocks in reply to AvidBooklover]

Good for you having him do that. Not something we want to do but illnesses like this are tough to deal with at times

[SabaAK in reply to U2Rocks]

❤️🙏

[Merma in reply to SabaAK]

Our oncology program has access to a great counseling program - free to cancer patients with some free counseling for caregivers as well. Whenever I have issues dealing with cancer, I can talk it out with the therapist at the center. They also have psychiatrists, so you can get medication if you need it.

We are living with cancer. Emphasis on living and still doing things that bring us pleasure.

How long has your mom been on the lower dose? Many of my side effects went away after a few months. My hair grew back in too.

[SabaAK in reply to Merma]

She’s been on it for 3 months now

[PJBinMI]

Ibrance can cause lung damage. Permanant damage. Getting out of breath quickly is a symptom to report immediately but you don't mention that in your note. Lowering the dose can help other side effects for some people.

[LadyKatarina]

I went from 125 mg Ibrance, to 2 weeks on and 2 off, to 100 2 weeks on and 2 off. then saw a new onc and she said the long breaks were not good--but had me take it 2 weeks and 1 off. Then due to the new tablets being so strong (originally I was on the capsules) we dropped to 75 mg. 2 weeks on and 1 off. The 2 week on cycle really helps. Ibrance is not taken alone--so if she is on an E-blocker, it can have SE's too. After 3.5 years of no progression, and having all my solid tumors surgically removed, we stopped Ibrance. I am 75--and I decided having these last years with some quality of life is important too. Lots of things to balance here. Best to you!

[SabaAK]

Can I ask where your Mets were and did they remove breast tumors?

[Aquadog]

Hi Saba,

From personal experience and reading comments in this forum (and others), side effects do seem to get worse/different the longer you're on Ibrance. I've been on Ibrance for 4 1/2 years (only the first 6 months or so on 125mg, 100mg since then). At about the 2-year mark my hair thinned to the point I had to buy a hairpiece to hide the bald spots - it has all grown back and been normal since (took about six months to go through that cycle). At odd times tastes and smells are off or extremely sensitive, but not all the time. I've had mouth sores from time to time. I haven't had weight loss. The SEs that are constant for me are anemia and fatigue. Two months ago my doc pulled me off Ibrance for two months because of anemia. Finally, my numbers went back up and I'm back on my 3 weeks on, 1 week off routine. I handle the fatigue with staying busy. Your mom will need to keep her oncologist in the loop about her side effects - there's almost always something they can do to help.

Coming to terms with having cancer is a very personal journey. I applaud you for being there for your mom.

Wishing you and your mom all the best,

Susan

[SabaAK in reply to Aquadog]

Thank you so much ❤️. Her blood work is always good,even her CA 15-3 always in normal range. She doesn’t have anemia. Her main side effect is constant headaches and GI symptoms. Today she was better actually and I feel much better:). I think her Symptoms may be caused by too much vitamins . She’s been taking all kind of vitamins and calcium for almost 5 months,those can actually cause a lot of side effects and plus her insomnia. Her doctor prescribed her medication for insomnia but still no good sleep. She decided to stop vitamins for some period of time and see if her symptoms will improve. 🙏😘

[howsthis]

i've been on ibrance since 2017. my hair is always falling out, but not gone, just thin. my wbc is always very low, i tire easily, and have gained rather than lost weight. recently, i learned that femara, which i also take, can affect my cholesterol, and it has. my cholesterol is a bit high, and now my vitamin d is too low. so, i need to change my diet a bit, and take even more vitamin D supplement. however, the scans that i get every 6 months have shown that my mbc remains stable, so the meds are doing their job. i guess i shouldn't complain about the effects. we do tend to get cranky about all this, so have patience with your mom. she's allowed to complain because all of this really sucks. but also be glad she's still here with you! just remind that you love her and you're there for her.

[SabaAK]

🙏❤️