Hormone therapy and endo-brain

[DinNorCal]

I have been on Ibrance with Letrozole for about 18 months. Letrozole has now been switched to Faslodex.

I had noticed recently that I was having trouble finding a word I wanted to say. Like making a phone call and then a word I needed, like “refill a prescription “, would not come into my mind. This has been scary as I am in my late 60’s and feared Alzheimer’s was setting in. I unexpectedly just came across an article from US News magazine 2017 article, about some possible side effects of hormone drugs used for Breast Cancer. Below is the part of the article that gave me an explanation for my inability to fine a word.

Article:

These drugs also carry a slight risk, "about 2 percent of absolute risk" Sardesai says, of cardiovascular problems, as estrogen is involved in maintaining heart health. They may also cause a condition called "endo-brain," where endo is short for endocrine. "Endo-brain is like chemo-brain," Sardesai says, which is a mental fogginess that can result from chemotherapy. "Endo-brain can lead to word-finding problems," where you're searching for the right word and it just won't come. It can also "affect cognitive processing," which may impact your ability to complete simple math problems or other mental tasks that involve numbers. This condition tends to build up over time, so patients on these drugs for shorter periods are unlikely to experience endo-brain, and it's a relatively rare side effect.

Anyone else experience endo or chemo brain while on the hormone therapy?

[Hidden]

Hello,

Yes, I have had this. I've been having hormone therapy since May and have had three episodes of forgetfulness. Two were when I was driving and completely forgot how to get to my destination and on another occasion I bought a sun hat and lost it within a month or so! I am fine now, but during the first few months of treatment it seemed as if a lot of side effects were amplified until my body got used to everything and then things settled down.

Sophie x

[DinNorCal in reply to Hidden]

Thanks for your reply. I had the same occurrence the other day. I was driving home having a discussion with my passenger and all of a sudden I didn’t know where I was....it took a couple of blocks to get oriented. Quite scary. These side effects are the pits.

[Barbteeth in reply to DinNorCal]

Hi

Me too!!.. disorienting and a bit scary..only happened once so far..at least I can blame the meds!!

Barb xx

[Hidden in reply to DinNorCal]

You're welcome! It can be scary when this happens. I'm glad it is not a regular occurrence. This hasn't happened since the summer.

Sophie x

[BeckyHobson in reply to Hidden]

Sophie, any chance my glasses are hanging out with your sun hat? Lol

I took my watch off this afternoon and swore I put it on the dresser with my medical I’d bracelet. Frantically looked for the watch for 30 minutes before finding it in the desk drawer?? How the heck did I forget that?

[Hidden in reply to BeckyHobson]

Hi Becky,

That could be! Hehe! I have not found the sun hat. I suspect I put it down when I was visiting a charity shop and it was mistaken for a donation and sold. I retraced all my steps and I never found it! Oh well.

Sophie x

[PLASEM]

I had just switched from Letrozole to Faslodex and I feel like when i had chemo the Foggy brain not to severe, my memory and concentration are not good i have to put an effort to do simple things and not make mistakes, why did you switch to Faslodex, take care and God bless you

[Epinto in reply to PLASEM]

Yes I just mentioned this to my doctor yesterday. I am on ibrance for more than two years and faslodex and I definitely see some changes to my concentration. It’s scary!!!

[DinNorCal in reply to PLASEM]

Placement, I had been on Ibrance/Letrozole combo for 18 months then scan showed slight activity in my spine Mets. I have spine and lung mets. My Onc switched me to Faslodex/Ibrance.

I get my second Faslodex shots today, sure hope the side effects don’t increase.

[kkrouse]

I have some of that. I know it’s the drug because I was getting back to my old self when I had a three week break from the Ibrance.

[diamags]

I've been on Faslodex for 5 years and I definitely have problems finding words. However, it seems more of an inconvenience compared to other possible side effects of other drugs!

[Epinto in reply to diamags]

Five years! That’s so encouraging!! I have been on faslodex and ibrance for 28 months now. Hopefully these drugs will help for many years!

[Snowcone16]

Yes, me too. 47 years old. Hard to say if it’s entirely meds or that I think a lot lately. I think it’s improved the past 3 months though. For me, I couldn’t follow a conversation for more than 90 seconds...just got distracted maybe. Then I’d walk away and think “what we’re they talking about?”

I write myself lots of notes now. I’ve only done hormone therapies and alternative therapies. Chemo may be in the cards later...what am I saying maybe?! I’m sure it’s in the cards but right now the course is hormone therapy.

Did tamoxifen for 14 months then found out I was stage 4. Then Ibrance and letrozole for 4 months. Now afinitor and exastamene. I also get monthly zolodex shots and xgeva. ❤️

[kduck in reply to Snowcone16]

I haven't seen you post in awhile, how are you?

[Hidden]

I was on letrozole for 3 years then after just over a year of Xeloda I was on Faslodex for about 3 months. I thought the odd problem of finding words was just old age kicking in (I am 74)! - not helped by the sort of anxiety I suppose we all live with to a greater or lesser degree. Maybe it started with the letrozole after all Only problem is it is not getting too much better!

[lynzer]

I get it too, been in ibrance, falsadex and chevalier about a year I get stuck remembering words and easily frustrated concentrating. I’m a school teacher and taking college classes has helped keep my brain more active and it helps.

[BeckyHobson]

Thank you for sharing this! I have been on Aromasin and Faslodex and Ibrance for quite some time now and feel like I am losing my mind most days. Some days are great and then others I am happy to string an intelligent sentence together. Super frustrating and I am seriously thinking I need to drop one of these drugs.

I am familiar with chemo brain having my first bout of stage 2B breast cancer back in 1999.

[Hidden]

DinNorCal,

I went to reply to a different post from you -- will do that in a bit -- but then saw THIS post re endo-brain and I cannot thank you enough for posting it! I have definitely suffered from this and brought the issue to both of my oncologists (local in Dallas + Sloan Kettering in NY) and all involved brushed it off with a mildly pitying tone "well, my dear, it's just age, or normal post-menopausal issues". What was happening was that I could not complete a simple spreadsheet exercise...think something akin to a monthly budget...when, pre-"all of this" I like made a living easily navigating reams of data, complex algorith

[Hidden]

...algorithms (I forgot that this site interprets an "enter" as "I'm done, please post! " ...etc. I would be stymied by simple addition/multiplication. That's on top of extreme forgetfulness, no longer being unable to access my vocabulary, etc. etc. I cried harder at loss of cognitive abilities than just about any other issue with my treatment, it just felt like if I lost my "brain", I would lose my identity. And I have, to some degree. Anyway, I explained to docs that I was quite certain this was not "normal" aging, but something related to my meds, so I am so grateful that you posted, and I plan to bring that info in on my next appointment!

[Hidden]

Sorry you are all feeling this loss of memory and yet it has put my mind at rest as this is happening to me. I forget words and names. I also am on falodex.