Ibrance and memory loss/confusion

[Asummerday]

Hello... I’m at a loss with concern about my mom... she has metastatic breast cancer that has moved to a tumor in her liver.

She started Ibrance this past month. Her oncologist took her off of Anastrozole, which she had been taking for several years with little to no issue.

Since starting the Ibrance 5/1/2020, she has been a bit foggy, lost track of time/tasks... but she ended her 21 day cycle of the pills and is in the off week until her shot of Fulvestrant in 4 days.

Over the last few days, while not actively taking the Ibrance, she has been completely out of it. Cannot remember what she’s doing, if she taken her meds, how to work her TV... this is a completely different woman than I’ve ever known her to be.

I called her oncologist today, and they connected me to the off duty doctors line. He basically told me that she’ll need to come in for an evaluation tomorrow, or I can take her to a minor emergency today (It’s Sunday... so everything is closed... also tomorrow is Memorial Day, so... the oncologist might not even be open tomorrow.)

My real question is this: has anyone else had these drastic side effects? I’m just so scared for her, and I feel so lost because she feels so lost, and due to quarantine I have not been able to go to appointments with her, so I really have no idea what I’m talking about other than what I’ve been able to figure out from her paperwork that’s around the house. She really has no working ability to connect dots in her brain, so I am not getting much out of her other than she feels lost.

[ChrisVict]

I’m not a doctor but I have taken Ibrance and there is slight memory loss but I don’t think for the short period your Moms been on. I think it’s more about the psychological

Impact of knowing one has has stage IV cancer. I would recommmend a psychiattist

To get her through this period. I lost my mind when I underwent chemo because my cancer was too aggressive when I was first disgnosed.

[Red71]

I seem to have some short term memory loss with my Ibrance, but it’s more like I can’t remember the name of the book you just told me twice to buy. I don’t feel lost. I think this is something that you need to talk with her doctor about. Here in our clinic, although visitors are not allowed in, they will make a phone call out to your car where you are waiting and include you in the conversation . Is this something you could ask them to do? If she is showing symptoms of having had a stroke, functioning less on one side or the other or not talking clearly, I think you need to take her to the emergency room to be checked fairly quickly. Please let us know your outcome.Hugs. Elaine

[Hidden]

Ibrance does affect your memory for some people but your Mum should be checked. She had a lot on her mind right now and New drugs plus stress can certainly affect her. If she is taking pain meds they can have a huge affect on your mind. Age can also be a factor. So many things. I hope you get her in to be evaluated.

[8576 in reply to Hidden]

Hi Sarah. Does memory come back if you stop Ibrance? I didn't know this side affect. Don't really like that. Sounds like it occurs fairly often. I am starting it today. Does this side affect usually show up right away?

Cheers, June S.

[Hidden in reply to 8576]

It was gradual for me. Age might be a factor too as would other meds we take. I’m 56 so that in itself adds to forgetfulness. Then add stress and anxiety. If you are more active then me you may not even notice it. A lot of people don’t seem to mention it so it may be a few of us. If Ibrance works for you then minor forgetfulness is worth it. My memory issues are not anywhere near what this lady’s Mum is experiencing.

[8576 in reply to Hidden]

Sarah, thanks for the reply. I see you are an early riser also. I generally like to see the sunrise. I am not a very active person either but find it takes a lot of energy just to look after myself and help my husband who is not so well. Then there is the cooking and cleaning. And I like to bake. I am approaching my 80th birthday in June. My memory isn't too bad but I can lose my train of thought once in awhile, when talking about something. Or names. Things like that. Just occasional. So I really don't want to be affected by a drug.

An aside, I listen to a lot of different singers on you tube at night. Ann Murray, Rita MacNeill Great Big Sea are in that group. My husband and I were Maritime wannabees. Just loved visiting there and NFLD and Labrador. Loved the land, the people and the seafood!

Cheers, June S.

[Rhwright12]

Praying for your mom! Praying the doctors can adjust her meds to fit her better! 🙏🏻💕

[Asummerday]

We went to the ER yesterday. Everything came back fine. Nothing in the CT scan, chest X-ray, urine, or blood. No tumors or signs of seizure in the brain... we didn’t get any answers. However, the ER doctor gave her an Ativan to help her get sleep (she’s had terrible insomnia within the last month of taking the Ibrance...)

She woke up this morning (after 12 hours of sleep!) working at a much higher capacity than yesterday. She started to remember a few things here or there, and even took a trip to my house 30 minutes away so I could pick up some clothes. My husband and my son helped me keep her company for a while, too, which was nice.

We left her house around 9:30am, and headed back to her house about 1:30pm... that’s when she got super exhausted again and she kept saying that she was “at a loss”. She’s taking a short nap right now.

This is all very sudden.

We couldn’t get in to see her oncologist today because of Memorial Day. I will be calling them first thing in the morning to get her in.

With quarantine I haven’t been able to go to her appts with her, and I hate not knowing what’s going on.

I’ve talked to her about keeping a bit active, not totally becoming a recluse, she’s just... alone, and has been for 10 years almost since my dad died. She likes living alone, and has a hard time including others (or allowing them to be included) in her time and space. Counseling/psychiatrist is not something I think she would do... it’s just not her style, even if I wish it was.

Thank you all for your comments! I just wish I knew what to do.

[Hidden in reply to Asummerday]

Sleep can have a major impact on everyday life. When I’m bot sleeping well my kind is mush. May I ask how old your Mum is? She certainly makes a difference as does any additional meds your Mum might be taking.

[ChrisVict]

You need to get her professional help to find out that one has stage IV cancer can have incredible effect on a person. Yes rule

Out physical side effects but taken from someone whose been there the psychological impact should not be ignored.

[Red71]

I’m glad you got her checked out and there is no obvious reason for her confusion. Lack of sleep combined with the shock of her diagnosis combined with new medications could all add up to something that looks confused! Maybe just getting a weeks worth of good sleep will put her back to normal.

When you call the doctors office ask if there is any way you can be included in her appointment, ie by phone or zoom call. If you tell them she has been confused, I’m sure they would try to find a way to accommodate you.

Is there a neighbor that can check on her daily since you are 30 minutes away? That must be frustrating for you!

Keep in touch. I was glad to see your follow up post. Elaine

[8576]

Sorry to hear you are having such a worry. Where I live if someone can't speak for themselves then they are allowed a companion for Dr. visits. Failing that, we are always allowed phone in visits to the appointments. Hope you can get it arranged.

Hope you soon find some answers. Cheers, June S.

[Nmartinez15]

I did experience short term memory lost too. My husband said that i am getting crazier bc i change the names of things and when i got out sometimes i forgot where i was going so i have make an effort to think hard! It came back to me in a few minutes! I hate it!

[Missie31]

I have been a teacher and I have two degrees. I am 74. I have had memory loss, usually naming things. I spoke with my doctor and she said this doesn’t happen. I had a seniors test and I know it showed significant loss. I am grateful for this site where a few others were discussing the same thing.

[Claireperth]

I’m nearly 65 yrs old and started taking Ibranc last September. I have a lot on at the moment and find my short term memory has got worse. I need to write down jobs that need doing and because of the tiredness don’t seem to be getting much done and my “jobs to do” notes are piling up! I try not to worry too much as I just put it all down to the side effects. I think getting lots of sleep is the key but with a husband who works nights and a new puppy, my sleep time usually suffers! I’ve only had one incidence where my mind became mush trying to figure out something that should have been easy! Generally my mind is clear but fogginess is definitely for me, a side effect. I hope sharing my situation is a help to you.

[November1944]

Hi there. I am off ibrance for a week and yesterday got completely lost about what day it was. Never happened before and hopefully never again. Very disconcerting Took a while to work out why nobody had their bins out. I expect it is a side effect of drug. I hope your mothers experiences are temporary!