Memory loss

[Hock15]

Hi everyone! I have a question for you guys on Ibrance and Faslodex shots. I have been on Ibrance for 6ms. now and my memory seems to be going down hill again like it did when I had chemo 8 years ago. Is anyone else having this issue? Thank you in advance

[Bluebird77]

I'm on Ibrance and Letrozole for a little more than a year now and I do feel like I have chemobrain...my memory is slipping and I just don't feel like my mind is as sharp as before.

[Hock15 in reply to Bluebird77]

Thank you Bluebird77 for your reply. I was really curious if was just me. What dose of the Ibrance are you on?

[Bluebird77 in reply to Hock15]

I'm on the full dose of 125 mg. Are you as well?

[Hock15 in reply to Bluebird77]

I was on 125 but I got mouth sores so bad so now 100mg. We are not 100% sure that this is working for me yet so why be so uncomfortable if I don’t know.

[Jerseygirl45]

I have been on Ibrance for 20 months. I see no difference in my memory except for the normal. I am 72 and do forget some things. Also it could be that our minds are thinking a lot about our condition and have that on our minds. Hard to think clearly all the time dealing with this.

[beleive]

Ibrance also makes me feel like chemo brain again...a little slower to think sometimes

[SusieIM]

thats a good question. I have been on ibrance, etc. for six months. I get tired more easily. The memory seems to be ok but am getting older, I chalk it up it's my age.

[Boogitymom]

I’ve been on Ibrance, letrozole, and xgeva for 25 months, definitely have had some changes in memory, some days are worse than others but still working full time.

[KarenHale in reply to Boogitymom]

I have been on the same combination for around 16 months and I do notice problems with my memory I don’t work anymore so I’m trying to do puzzles and things to keep my mind exercised

[Newtkim1]

I was on the combination for six months. I noticed that I had to really stop and think a lot when having conversations. Chemo brain...or just thinking constantly about the disease and it’s effect on myself...? Many Post-It notes!

[Hock15]

Thank you!

[PJBinMI]

I am 72 and have been on meds for E + mbc for a tad over 14 years and it's difficult to know how much of the holes in my short term memory are from age and how much is from treatment. For awhile I had a memory glitch that always made me giggle at myself--when I was in the kitchen and opening a cupboard door to get something, I often found myself opening the cupboard right next to the one I really needed to open! I never associated that with a specific med. Mostly, I forget nouns--names of actors on TV, names of items I am trying to mention. Usually not names of people or things I encounter frequently. Over 20 years ago I had a good friend whose mother had had Alzheimers and every time Sarah, the friend, couldn't remember anything, she would worry that she was getting dementia. I read something about dementia that has always stayed with me--if you don't remember where you left the keys, that is normal. If you have the keys in your hand and don't remember their function (keys go into locks, open them), that's what to be concerned about. I've only had a glitch like that once and it was clearly related to a med I had just started taking for something non cancer related and my dr. took me off it immediately and nothing like that has happened again. I just wanted to share that because it might be reassuring to some just as it has been to me! I may forget names but not functions! Whew! I developed a lung condition called Interstitial Lung Disease while on Ibrance plus very itchy skin and both continue now over 15 months since I stopped Ibrance. I got the most time with Faslodex, over 9 years and just stopped it and now am on Aromasin since last week. Way too soon to know if it is containing the bone mets but I am fortunate to never have had pain with this cancer.

[SeattleMom in reply to PJBinMI]

Just out of curiosity, why did you stop the Faslodex? Is this a bone med, similar to Xgeva?

[Epinto]

Yes, u r not alone! Been on it for close to two years and my mind is not as sharp as it used to be. I feel foggy at times and it makes me feel very anxious!

[darlenejulien]

My husband will ask me if I liked the movie we saw last night & I look at him stupidly! He then tells me the name of the movie! This month I start cycle #7 of Ibrance. Other then the memory loss, I feel good!

[lynnhbtb]

Oh, wow. I've been feeling a little foggy and disconnected at times and am now connecting it to Ibrance. I am on my break after 3 rounds. Huh. It could be the Ibrance. I swear there are so many tradeoffs with these meds. Cancer growing or brain fog? Kind of a no-brainer, forgive the pun.

Thank you, PJBinMI for your response. It's always nice to see a 14 year veteran of all this MBC stuff.

[Duranteg]

It has been my experience to notice forgetfulness mostly when I am tired. Ibrance leaves me very tired, and unless I get plenty of sleep, I have brain fog. I don't notice it much after a good rest. went from 125 to 100 due to extreme tiredness. starting my 12th round next week. stage 4, HER2 negative, PR ER positive. Ibrance and faslodex monthly and xgeva every three months. Chemo was much harder on my brain!!

[blms]

i honestly think that this diagnosis throws us all in a state of despair, at least for some period of adjustment and time. I am 68 and truthfully, I have always been terrible with names, so I have long ago given myself an out with forgetting a name of anything! I think that we are so rightfully concerned about finding and keeping the best health we can that this is our brain focus and its simply okay that we can't focus enough on mundane things and truthfully do we really care?!! There is only so much we can do at one time and right now, it is our health, family and for me my Lord. Don't be hard on yourself!!

[Hidden]

Hock15...Thank you SO much for bringing this up! I have had this issue and brought it up with my docs, one of whom attributed it to stress and the other to (oophorectomy-induced) menopause. Neither answer was satisfactory to me. I described my issue in detail...one minute example out of dozens a day: I was bringing the dog to the vet so tried to memorize the name of the food. One word. I read it, tried to commit it to memory, turned around and forgot it. Tried again. And again. Futile. I asked if this was a known side effect of Ibrance and was told no, and I said that if anyone ever wanted to do a study, sign me up because I have no doubt it's the Ibrance. I sympathize/empathize with you but, unfortunately, have no helpful advice. Oh, wait! Maybe i do.... I also complained about inability to think, e.g. figure out some simple financial / budgeting stuff, head math, etc. (and i used to do much more complicated for a living....). So one of my docs prescribed Adderall! I take it infrequently since I kind of feel that if I'm tired, I shouldn't mask it, I should rest because my body's talking to me....but every once in a while I take it and it does help with fatigue and sharpness of mind...

Again, thanks for raising this question....makes me feel slightly less nuts!

Take care,

Lynn

[Hock15 in reply to Hidden]

I know this is my life now but. I still work and run a house hold. I try not to think about my cancer. If I thought about it 24/7 I would go nuts. I just wish drs and others understood our issues lol. Like give me a f****** break. Sorry but that is how I feel, it sucks Lynn your not alone🤪

[JBirdnut]

Thanks for the giggle. I sooo get what you did as our new normal.