Hi all, I have found that over the last 3/4 months I have experienced very unpleasant memory side effects and slight dizzy and sick feelings during the week off palbo/ ibrance. Has any body else had this? It lasts about 3 days then goes. I can only put it down to neutrophils struggling to recover. I feel as if I am going nuts as I can't remember people's names or places. I am on week 28 ibrance and letrozole. Hope someone has an answer! Cheers, Fay
Memory loss side effect?: Hi all, I... - SHARE Metastatic ...
Memory loss side effect?
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Rotagirl
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Hi Rotagirl: Memory loss is certainly a side effect I’ve suffered with since starting IBrance/Faslodex/Xgeva 21 months ago. Not nearly as sharp as I used to be. Oh well. I’m glad I’m on Social Security Disability because I know I could not perform well at a job. ❤️🙏❤️
I’m an accountant and it’s pretty hard sometimes when my brain rebels. Was it hard getting on disability? I’m stage 4 metastatic to my lungs.
If you apply for SSDI as a stage IV cancer patient, it is an automatic approval. It was easy to apply on line on the SSDI site and in person. I just followed the instructions & it took about 2-3 weeks for response. Upon approval, the SSDI start date is the date you submit the request. However, there is a 6 month waiting period before monthly payments start & there are income limits in order to stay eligible. It is all explained on the SSDI site. You don’t need a lawyer to help you. Sometimes the financial assistance people at the cancer center can provide guidance.
I hope that helps.
❤️🙏❤️
Thank you. The 6 months is scary. How are you supposed to make a living?
• in reply toHalfpint2
Hi Halfpint2 - I agree w/ hopenowandtomorrow's response, i.e. easy and virtually automatic re: SSDI. I believe that the current income limit is about $20k so, e.g., my sis cut her work back to one day/week just to continue to service her valued clients.
If you also have employer provided disability, it's a bit more complicated and slightly less certain. If this applies to you and you'd like me to elaborate, let me know...
Best,
Lynn
Halfpint2• in reply to
Thank you
Ok my rep told me to have her call her. She does everything for you ! All the paperwork and walk you right through everything at no charge I got it in 2 weeks. 1- 877-261-1947 Her name is Lena and tell her Dywer sent you.My friend just called her last month for stage 4 bc and she was approved in a couple weeks..She was so glad she called!
Does the woman charge? There is no reason she needs a rep if she is stage iv. It is automatic approval so no need to pay anybody. She can go down to the office by herself. I had a nurse navigator at the cancer center that took care of it. I had waited bc I had no energy to do the paperwork but SSDI gave me back pay of $25,000 which I was not expecting but was so happy to get because I had taken a bulk of my 401-K money to survive bc I was diagnosed in between jobs.
I have experienced memory loss. I did take Ibrance but it quit working so I had to switch to Piqray, another chemo pill.
I’m following a similar path. I just started Piqray this month. Any words of advice?
Hi Sparky95, I have been on Piqray since January. The major side effect for me is loss of appetite. I have lost 62 lbs. this year. Also, Piqray throws your blood sugar into a diabetic state, so I have to take Metformin. My digestive system is a mess. I have stopped dairy, which has helped.
Hi Rotagirl I am actually on my 7 days off right now and I always feel terrible for the first 3 days. I feel that way today so I am in bed. I dont know why but I do feel awful. And I do struggle with memory loss.
Strange isn't it. All a massive unwanted learning curve. Take care. Fay
Not sure , I do have this happen occasionally but hadn't tied it to a pattern and tablets.I've just had a couple of days feeling fluish with a sore throat, but it goes away without coming to anything and no temperature. I know this has happened a number of times but as I don't note when it happens I haven't related to meds . I'm on week three of Ibrance, eighth month in.
As I felt so awful before I was diagnosed I think I've just accepted these blips as minor compared with how I was. But I've noticed a lot of this community noting patterns in their cycles.
Should I keep a record, how relevant is it to future treatment?
• in reply toBeryl71
I don’t think it’s relevant to future treatment Beryl, and it’s up to you if you want to monitor symptoms or not. I’m the same, I feel so much better than I did before taking the meds that I don’t mind some side effects, and I am grateful I can lead a normal life for now.Clare x
• in reply toBeryl71
I will start to keep a record and then I don’t follow through after a couple days . I think it would be a good idea while on a treatment to see if there is a pattern . If there is you can adjust your life accordingly and plan around the bad days . Also if you are asked by your dr when a symptom started you can say 3 weeks ago , where as I would say a month or two ( struggle with concept of time ) . I can’t see any harm in keeping a pain & symptom journal . Luann
Hi Fay. Sorry you are suffering with your memory. I have noticed people’s names are slower coming to me than usual lately. I haven’t noted when as it seems to be a general thing with me. I am still working and find that helps because I am busy and have to use my memory more.What dose of Ibrance are you on? I was put down to 100 mg when covid hit, and I have noticed my side effects are a little less, and my neuts are better. Might be worth discussing with your nurse or Onc. It’s never nice to feel dizzy and sick.
Clare x
Rotagirl• in reply to
Hi Clare, thanks for replying. I am on my 28th month of ibrance and letrozole so that is very satisfying. I have been on 100mg for about a year I think. I could drop to 75 as my neutrophils go so low and I have to have 10 days off. We'll see. Fayx
Beryl71• in reply to
That's interesting. I started treatment during first lockdown and was put on 125 mg.
Rotagirl, welcome to the club. I feel like my memory does slip, more like all the time. I have been on Ibrance 100 for over a year. Usually towards the end of week 3 and week 4 (week off) I experience shooting pain somewhere in my back. The location changes monthly and memory problems accompany the problem. It usually lasts for 3 days, last month I took 2 days off and rested in bed. Funny but it always goes away.A suggestion; if there is something important that you need to remember, try going through the alphabet. Say each letter slowly and let your brain react. Usually there is one (maybe 2) letters that trigger a response and slowly a word/name ensues. It is sooo much fun to begin to learn again!
Gizwell, quite a carry on isn't it. I just realised I said I was on week 28 and in fact it is MONTH 28 for palbo and letrozole. I am so pleased it is still working, no progression from last scan in November. Feeling much better this week....(day 7 of week off). Here's good wishes and hope to all of us, Fay
Fay,I forget things to and can't focus well. I have to make lists to remember things. On Ibrance and Faslodex.
I also consider it as a side effect of chemo brain from my first dx.
Thanks for your input mariootsi, never a dull moment is there? Have a safe and jolly Christmas, Fayx
Me too maritoots! But lately my facial recognition is just gone! That seems to be new.
There's always something.
I’m so glad you wrote this. I had noticed that I was having a harder time recalling word that I knew used to be at the top of my tongue. I hadn’t thought of it being a possible side effect of the Ibrance or Fulvestrant. I am just now changing to Piqray and Letrozole due to progression.
Hi Sparky95, good luck with the next medication. I am still on ibrance and letrozole and have been for 28 months. 100mg at the moment perhaps move to 75mg who knows? I am on day 10 of the week! off and feel much better. All the best thanks for replying, Fayx
Hi! I haven’t connected it to the timing of my meds but I definitely have memory loss. I thought it was more of a menopause thing though since they removed my ovaries but I’m going to pay attention now to when I’m on the off-cycle of Ibrance. I know my neutrophils are always low... though even if I wait until day 6 of the off week to get tested.
I too have been having memory loss. I do not link it only to the time off Ibrance. You
Hi Rotagirl
I first noticed this on day 20 on my first complete cycle of Ibrance. I cried one day because I saw that I was losing my cognitive abilities and for me part of my independence. I recently brought it up with my new oncologist. She said it is caused by fatigue. She suggested crossword puzzles and daily exercise activity. I am having more problems remembering names. It may take me 2 or 3 days before I can remember one. My executive functioning has been declining on weeks 3 and 4. At the same time my fatigue is very bad. It helps me to bullet journal. Somehow, it helps my brain to be more effective at managing my daily tasks. Where I was living after the mets diagnosis was not the safest place for me as a single person. I moved into independent living, continuing care community. It has been a hard decision, but one I had to make. I can take it easy here on the tough weeks.
Sorry to hear you are having memory issues. You are not alone.
Hi pinkrv, thankyou for replying. I am sorry you are having similar problems. It is quite frightening when your brain misbehaves isn't it? What does bullet journal mean? I am in the UK and I don't think we have that expression. Exercise etc sounds a good idea, all the best, Fay
Thanks Fay. If you go to bulletjournal.com you can find out more. Here is a free video: bulletjournal.com/pages/learnI checked out the book at the library last year and also watched some videos. Instead of buying a premade organizer, you design one around your activites and goals. The man who developed the method was stuggling with ADHD if I recall correctly. Basically I do a brain dump and write down everything on my mind. Then I can set goals on how to get it done, such as for the year, month, week, day. He uses certain symbols for different things. Each task for me is a" ." and appointment is a circle. When I finish it, I made an x through it. If I need to roll it forward I use an >. If I do not journal, I do not get hardly anything done. If I keep up the habit, my life is more managable. I hope that helped.
Wow. This thread is so interesting. I have been having many of these symptoms—fatigue, memory loss and back pain. Oh and sore throat! I have been on Ibrance and Anastrozole for 17 months.
I am still quite active so thought I was overdoing it. Or that it might be progression (I have scans this week so my mind is going to all “those” places)
That’s why this board is good—it helps to know one isn’t alone—and to benchmark things like side effects a bit.
My oncologist did say that the AI drugs can mess with memory, some more than others, so it might not be the Ibrance.
He also said that I get fatigued because for my body “fighting cancer is hard work”. I liked that image—it made me feel more empathy for my beleaguered body and realize I need to look after it. 😅
I haven’t had memory SE but when you mentioned dizzy....I started on the max dose of Ibrance and reduced to 100 after 3 months because of dizziness. I continued on ibrance for 46 months. Can you reduce dose?
I can reduce from 100 to 75. Perhaps I will. Rotagirl is from days before diagnosis when I was organising teams of volunteers for tasks in our busy Shropshire church, St Laurences. Ludlow. That could have been readers, welcomers, shop helpers etc. I am still singing with the choir but have given up doing the rotas! 46 months is very impressive. Fay
• in reply toRotagirl
My husband has just been to Ludlow. He said it is a lovely place and the church is beautiful.Clare
Rotagirl• in reply to
So happy to hear that, xx
Thanks. I’m a Rotarian and a champion survivor! Good luck!
Rotagirl....where did that come from? Are you a Rotarian?
I was guessing she is from Rotorua nz near me?
Wow! I forgot how international this group is!
I’ve been on Ibrance since 2017. I have the same effects. My memory issues seem to never go away unfortunately but that’s mostly from the amount of chemo that I’ve had, complete hysterectomy and continuous Ibrance use but I’m alive and doing very well otherwise. I do get very sick when flying now. Which is also attributed to the Ibrance and the dizziness. That also comes and goes. It just is what it is and it’s not debilitating. You’re not going crazy and you’re not alone. You’re a warrior, fighter and winner. God bless you.
Hi Rotagirl...
I totally "feel you" on this, my brain is absolute mush. And it's not just memory, it's also functioning...e.g. my ability to work with numbers/do head math, solve problems, etc., is seriously maybe 20% of what it used to be. So, like you, I'm grateful that I'm not working anymore, I'd be pretty close to useless! 
...But, small price to pay for the benefits of the meds and now I focus on endeavors that use parts of my brain/self that had been long ignored but are almost certainly more important. So there's def a silver lining...
My very best,
Lynn
Rotagirl• in reply to
Thanks Lynn for your support and suggestions to help. These medications are amazing. I just don't want to crumble into a heap just yet! Fayx
I definitely am having a hard time remembering things - usually some word that’s just on the tip of my tongue but I can’t seem to get it. I didn’t notice if it was correlated to timing of the meds but now I’ll pay more attention. Had just attributed it to aging but given that I haven’t hit the half century mark, it’s probably more likely the meds.
Sounds simplistic, but my memory (for numbers, at least) has improved since I’ve been playing solitaire on my phone!
I must try that, thankyou.Fay
Hello Rotagirl,
I have noticed that I can be thinking about something and if I have the slightest distraction, I can forget what I was thinking about. Also, have noticed that I cannot recall names of people that were a big part of my life not too long ago. I didn’t know if it is age, my GBS, or “chemo brain,” but my memory is not what it used to be!
Best,
Colleen
Thanks Colleen, it is all a bit depressing but there we go it is what it is. Out to lunch today, that will cheer me up. All the best, Fayx
I have had the memory loss problem for awhile now. It takes simple words from what I am trying to say. But I can define the word and the people I am talking to can often come up with the word.
Thanks for replying. Glad I'm not alone. All the best. Fay
I had memory & cognitive issues when I was on Ibrance. Couldn't remember what I'd just read, had a hard time getting words from my mind onto the computer so they'd make sense to the reader, couldn't think of the right word for something, etc. This is one of the reasons I had to temporarily leave seminary. With the capecitabine, my memory and cognitive abilities have improved. Thinking of returning to seminary either this spring semester or summer as a part time online student.
As I have got older my memory has not been as good, but it’s worse than ever now
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