Discontinuing Zytiga and increased me... - Advanced Prostate...

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Discontinuing Zytiga and increased memory loss

lss65 profile image
18 Replies

Has anyone had increased short term and medium term memory loss after he decreased his dosage of Zytiga. Reducing his dose from 1000 mg to 750 mg, on the way to totally stopping the Zytiga. Noticeable memory problems have developed the past 2 weeks, though neurological side effects seem lessened.

Any experience with this process of stopping the Zytiga and what to expect along the way? Lupron is beginning to go down in his system as well as he will stop the injections going forward.

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18 Replies
Tall_Allen profile image
Tall_Allen

Why is he slowly stopping Zytiga? One needs to wean oneself off prednisone, not Zytiga.

lss65 profile image
lss65 in reply to Tall_Allen

his local oncologist had started him slowly tapering down, then he just met with his specialist who advised him to stop it altogether. I never understood the taper down strategy myself. when he originally was aiming for 250 mg with food He is very aware of the need to taper down the prednisone. I'll tee this question up for my guy to further on to the specialist. honestly, I wasn't at that first appointment and it could be mis-remembering what he was supposed to do, and then at the specialist appointment I forgot to ask about this bc we were so engaged in so many other topics.

Tall_Allen profile image
Tall_Allen in reply to lss65

One doesn't taper down prednisone when one has 250 mg abiraterone with food. The absorbed dose is the same - that's the whole point of it. It is to save money, not to diminish efficacy.

lss65 profile image
lss65 in reply to Tall_Allen

Before deciding to discontinue both abi/pred and lupron, the local MO had planned to taper him down from 1000 mg Zytiga to 250 mg Zytiga with food to see if intolerable neurological side effects might get under control that way. My question has always been, why the stop over at 750 mg on the way down to 250 mg, except that it has been interesting for him to have the vast increase in energy level and cessation of most neurological side effects at the 750 mg level - but increased short and medium term memory loss has been very noticeable.

Now he's going to go off abi/pred and lupron entirely. I have no idea if the abi and lupron are stopped abruptly in that situation, and the pred decreased gradually, though that has been my suspicion. With the memory loss at the 750 mg level, however, I do worry that complete cessation of abi all at once may bring on an entirely new set of issues.

Tall_Allen profile image
Tall_Allen in reply to lss65

Why would neurological side effects abate if the same amount of abiraterone is absorbed? This makes no sense.

lss65 profile image
lss65 in reply to Tall_Allen

he never got to the point of having the same amount absorbed bc he only got to 750 mg, without food. I wondered exactly the same point you raise, but since the specialist is taking him off everything, it became a moot point. at a 250 mg dose reduction, without food, the neurological side effects decreased and he has had far more energy.

Drphil1938 profile image
Drphil1938

I have gone from 1000 mg per day to 500 trying to reduce some fatigue. So far after 4 months fatigue has diminished, memory unaffected, PSA still undetectable.

j-o-h-n profile image
j-o-h-n in reply to Drphil1938

You're posting again...... I guess you ran out of gin....Welcome back!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 04/12/2021 12:47 PM DST

Drphil1938 profile image
Drphil1938 in reply to j-o-h-n

Never, but was in Florida for winter and I just thought all of you needed a vacation from me.🤠🍸🍸

j-o-h-n profile image
j-o-h-n in reply to Drphil1938

Yep now I can see that you look sunburned......welcome back

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 04/13/2021 7:50 PM DST

Drphil1938 profile image
Drphil1938 in reply to j-o-h-n

I tried nude sunbathing but got arrested for overexposure.🤠🍸🍸

j-o-h-n profile image
j-o-h-n in reply to Drphil1938

Next time use a bandaid......🤠🍸🍸

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/14/2021 2:20 PM DST

Drphil1938 profile image
Drphil1938 in reply to j-o-h-n

Cruel!🤠🍸🍸

j-o-h-n profile image
j-o-h-n in reply to Drphil1938

🤠🍸🍸

*** To play this video click on the title on top of the video ***

youtube.com/watch?v=b0l3QWU...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 04/16/2021 12:39 PM DST

MateoBeach profile image
MateoBeach

Stopping it (not reducing it) will reveal which side effects were due to it. If he still wants and is advised to stay on some form of hormonal treatment to reduce testosterone, then estradiol patches can work with much more positive side effects. ( It can still keep testosterone very low or castrate if that is still desired for cancer control.)

lss65 profile image
lss65 in reply to MateoBeach

He is stopping it as of this morning, and not getting any more lupron shots. The side effects of his treatment were egregious and until he finally was able to tell me about what was going on in his head, and I got him to get the information to doctors, the situation was disastrous. The current plan is stop abi and lupron, wean off prednisone, monitor PSA level every 2 weeks or once a month out of pocket cost, and see if possibly he has had a cure to the cancer. He is stage 4, so the truth is that is highly unlikely. However, he also did something unusual which was jockey the system to do radiation and lupron and abi/pred simultaneously after having had a radical prostatectomy, so he is hoping that hitting himself with everything at once instead of sequentially may have given him a boost up toward a cure. Now that his doctors have finally caught up with what he did with jockeying the system, they are watching carefully as well. He is the newest experiment in aggressive treatment.

If he needs to go back into treatment, he won't ever do lupron again given the significant dissociative side effects he suffered. Orchiectomy or derugolix I think would be the first castration options, with 250 mg abi/prednisone with food, and then seeing if that type of combination is more tolerable than the lupron 3 month/4 month shots plus 1000 mg abi/pred. So, the next step is in place and in the back of his mind if/when his PSA rises above undetectable. It has been undetectable for over 2 years now.

People need to be aware of the emotional side effects that can occur with these toxic but necessary drugs - it is not just depression or anxiety. The entire spectrum of emotional functioning gets implicated.

MateoBeach profile image
MateoBeach in reply to lss65

Excellent plan. Happy that you are on top of it now. Beat of luck with it and keep us informed. There are always options.

Spyder54 profile image
Spyder54

6 mos since Dx. Im on Zytiga, Prednisone, Firmagon. 2 months on after 2 mos w Xtandi failed me, and first 2 mos on Firmagon alone with good results. Some memory issues but more brain fog. Hope u find Cure❤️

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