Memory loss with Lupron and Xtandi - Advanced Prostate...

Advanced Prostate Cancer
10,722 members12,834 posts

Memory loss with Lupron and Xtandi

tomtom9148
tomtom9148

I have been on Lupron for 3 years after diagnosis of mPC with lesions on L2, S2, and H6 in May of 2016. I was in a clinical trial at NIH for Dosetaxel with Prostvac, then continued at NIH for checkups and 3-month Lupron until November of 2017, when PSA rose to 2.5 (original was 16, went down to .06). Then used home Doc at Kaiser Lonetree (Denver) and added Xtandi 120 mg/day. My PSA is up to .99, so might be Jevtana in my future, I have been experiencing memory loss lately, struggling for words and difficulty expressing myself, which is very frustrating. There is a history of Alzheimer’s in my family, Mother, her mom, her brother and her sister. Should I take a Lupron “vacation “? I see my new Doctor Menter next week, as Dr Mayer moved to Glenwood Springs.

16 Replies
oldestnewest

It may be a good idea to see a neurologist to get a proper diagnosis. You want to rule out vascular incidents.

I too have the same symptoms.....lupron/erleadmpc glsn 9...ductal .. .just saw doc today say vacation out of ?. . .as suppressed test.....would not revive that quick.....and if sleeping cells awake....his words " youre fkd"....my psa creeping ... .1.....nadir .oo7.... when I asked him about the Alzheimer's link in the memory stuff they never do will acknowledge that that's a bad side effect the freaking 30lb I've gained and the hot flashes they acknowledge that's a side effect

I’ve been on Xtandi and Lupron for almost 5 years now. Definitely have short term memory issues, searching for words/names, cognitive issues, brain fog, etc. I just chalk it up to the new normal, I chuckle to myself most of the time.

Ed

monte1111
monte1111 in reply to EdBar

I just realized I chuckle a lot also. Except when j-o-h-n makes jokes. I think we are both really really screwed. I picture Norman in Psycho.

j-o-h-n
j-o-h-n in reply to monte1111

youtube.com/watch?v=xWHYmNr...

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 07/25/2019 8:49 PM DST

Stage 4 here, diagnosed August 16. Taxotere with lupron and Xgeva. Been on Xtandi since finishing chemo. So about 32 months. Now on eligard and Xgeva monthly. Yes the memory loss is a fact not sure which one is doing it, mine has gotten a little better but so aggravating,I have to draw a mental picture before I can say some words or stuff. A lifelong salesman ,this disappoints my as I can’t remember Jack 😖😖

And remembering Jill wouldn't do you any good.

My husband on Xtandi and has memory loss, too. We don’t know if it can be blamed on androgen deprivation or coincidence.

HT does cause brain fog . Testosterone is man’s best friend and you’re reducing it to nil. How can it not impact you in many ways?

But yours sounds more problematic than usual.

Definite memory issues. And finding the word has become a game. Friends finish my sentences, just like we used to do for a friend who stuttered. Only way I find myself back here day after day is because it is bookmarked. 2 years 4 months lupron. 23 months Xtandi.

Did Monte mention me in a post recently?

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 07/25/2019 8:38 PM DST

Lupron really messed me up (I quit after 16 months because I was having a nervous breakdown), left me frantically looking for words, slowed my brain and everything else down and left me in a fog far too often.

I'm was told it's a side effect (after the fact)

The talking heads don't seem to want to say much more, but I believe there was a recent suggestion (public news or newspaper - I forget which) that long term ADT use MIGHT be linked to dementia.

More studies are necessary.

How comforting .....

Thanks folks, I am finding that I need to not skip meals and take breaks. When I get focused on a project, especially physical ones, I tend to not take care of myself. If I eat on a regular basis, remember to drink water and take breaks, it is better. But, it sounds like the conversation with my doc is in order.

I’ve been Lupron and Xtandi for over 5 years. Side effects for me: ED, dizzy, cognitive skills, short term memory loss at times and brain fog. Appetite has come back; food tastes better; and I no longer have hot/cold flashes. I still feel fatigued. However...when I consider the alternative, I count my blessings. I’ll be 80 in February and would feel differently about my plight if I were in my 50s.

I have been on Lupron for 14 months. I had 3 months in 2011 and 4 months in 2016. I never noticed any decline in memory or cognitive issues. The latest Treatment started December 2018 and will continue until December 2019. I have definitely noticed a decline this year. Difficulty in remembering words and doing simple math calculations in my head. If my PSA stays really low I may get a holiday. I am hoping my memory will improve when I go off Lupron. Any comments on recovering memory after a year or more on Lupron?

Tom(?)

Yes, yes and yes!!! I see sooooo little about this subject!!!!!! I lost a great deal of cognitive & executive abilities of which my speech is paramount!!!!

My biggest fail is speaking spontaneously. Complete blank at times.

Secondly, in the middle of a sentence, a word just disappears. Sometime half way through??? Or I substitute a word with a similar one that does not apply. I don’t know if my anxiety was a result of that or a coincidence but getting enraged sure added to the problem! None of this prior to ADT.

Bumping into old friends and standing there without a clue as to what to say, lead me into a life of seclusion until my wife kicked my ass and we resumed meeting with only very close friends. That was quite awkward / embarrassing, but they understood.

Recently tried a Prozac type med (Fluotin(?(threw bottle away))) to help with that, if you don’t think you can feel worse, then go for it!!! It sucked out loud for me!!! I stopped it 2 weeks ago......we’ll see what happens.

I did have a Neuro Phyc.... exam but with the absence of baseline data, they could only compare me to my average age group but Alzheimer / dementia was ruled out. In my diminished state, I no longer have the ability to discuss this intelligently but they did say that my complaints were substantiated by the exam’s results!!! I too have family history of Alz.... so this info did put my mind to rest a bit!!!

Jc

You may also like...