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stopping zoladex

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Posted 3/30/2024 12:49 AM (GMT 0)
a bit winded, but here is my story.
i will make it short as possible.
I was diagnosed at stage 4. one lesion. that was two years ago plus and my onco says i have no prostate cancer in my system after zapping and erleada along with 3 month shots of zoladex.
so, i do get flushes. in warmer weather, it more frequent than during the winter.
i cant last more than 8 hours so I fall asleep for 1 hour. I feel weak at times and in the morning my knees hurt and my ankles sometimes.
is it due to age ( am 82)? ,is it the zoladex,?
am off erleada a good 6 months,
here is the upshot. we are talking about stopping the next 3 month cycle of zoladex. I asked for it so I can maybe get rid of the flashes, get a bit stronger and not so tired.
erleada made me anemic, because the next day without the daily pills, I felt so much stronger.
bsed on my results, she said i could go off the erleada. I was past that with the results I had.
If anyone out there had gone off the zoladex for at least 3-6 months, how long was it before your flashes went away and did you feel more normal.
btw. my psa for the last 2 plus years is zero or as close to that.

thank you
Posted 4/4/2024 9:58 PM (GMT 0)
Zoladex works best for me, after trying Lupron then Firmagon. Those two did not suppress my testosterone consistently, leading to "spikes and flares" in my PSA.

One thing to consider ~ I get the one-month dose of ZOLADEX injections. My oncologist is wary, in regard to giving the three-month injection, as he feels it could potentially lead to greater fatigue.

Just something to consider. It's worth a discussion with your oncologist.

With my best,
CYCLONE ~ # Iowa State University
Posted 4/4/2024 10:46 PM (GMT 0)
thanks a lot for your input
i am on 3 month zoladex. i can tell you i get tired enough that every 8 hours I am zonked.
hard to walk and get tired quickly. i nap for 1 hour or else.
I know its the ADT and i am quite frustrated. I cant play sports anymore. i am just to weak to do so.
i think sometimes to go out and try with the guys, but I know I will sit down and maybe, just maybe, fall asleep. don't laugh, it is how I feel
so i did speak to my Onco and she did suggest I miss one 3 month shot to see how I am doing. Remember its over 2 years all scans show clear and i had only 1 lesion, zapped out back then.
my 6 month bone scans of course will continue.
I was wondering though, how my body will react to the depravation of the ADT. will my body hair grow back , will soreness in my ankles disappear, stuff like that. maybe i can lose the 25 lbs. I gained off as well easier.
i will post something about my experiences when i finally go off Zoladex for 6 months .
best regards
Posted 4/4/2024 10:48 PM (GMT 0)
now I realize I told you about it before, so I will, as I mentioned, post any changes to my body and mind after I get a sabbatical from Zoladex.
Posted 4/5/2024 3:15 PM (GMT 0)
If I understand correctly, you were on two forms of Androgen Deprivation Therapy after brachytherapy? And currently on one (Zoladex)?
I am of course a nobody, but my understanding is that 18-24 months of ADT is the current max for people in the intermediate risk category who have undergone radiotherapy.

PS: Taking a nap is good for just about anybody in the 'mature' category.
Posted 4/5/2024 3:33 PM (GMT 0)
hi
i started with Zoladex
after about a year or so, i was asked to participate in a study here in Canada of 444 men with stage 4.
after about a year, i noticed i was very very tried, anemic actually, so I called my Doctor and she said I should go off the program to see if it will help. the next day, it was 1000 % better. much stronger, so she said, i could stay off it ( the program of Erleada) it " as I was passed it now", whatever that meant.
so just back on zoladex. its over 2-3 years, every 3 months and i was told there are people on it for many years if it is still working for them. I want to try and come off it too. the reason is simple. it effect parts of my body. i get sore ankles, feet, soles and other strange aches and pains. its not my heart.
as I mentioned its over 2 years of tests and all show negative. the lesion i had was zapped out. actually , it cracked the rib 2 years later. was surprised, but that's healed now,

look, every case is different. every man is different. some swear by the meds they get with no or little side effects, others take the same dose and suffer enough to complain and complain. of course we complain. its not normal. but we are breathing.

reminds me. if you get up in the morning and do your exercises where you swing your arms and you see you are not touching wood, you are o.k.

take care and best of luck
Posted 4/8/2024 1:39 PM (GMT 0)

racquetball77 said...
hi
i started with Zoladex
after about a year or so, i was asked to participate in a study here in Canada of 444 men with stage 4.
after about a year, i noticed i was very very tried, anemic actually, so I called my Doctor and she said I should go off the program to see if it will help. the next day, it was 1000 % better. much stronger, so she said, i could stay off it ( the program of Erleada) it " as I was passed it now", whatever that meant.
so just back on zoladex. its over 2-3 years, every 3 months and i was told there are people on it for many years if it is still working for them. I want to try and come off it too. the reason is simple. it effect parts of my body. i get sore ankles, feet, soles and other strange aches and pains. its not my heart.
as I mentioned its over 2 years of tests and all show negative. the lesion i had was zapped out. actually , it cracked the rib 2 years later. was surprised, but that's healed now,

look, every case is different. every man is different. some swear by the meds they get with no or little side effects, others take the same dose and suffer enough to complain and complain. of course we complain. its not normal. but we are breathing.

reminds me. if you get up in the morning and do your exercises where you swing your arms and you see you are not touching wood, you are o.k.

take care and best of luck


..........................................................................................................................................................

Hi Racquetball77,

I am very interested to read the responses you get and to see what you figure out. Like you, I am very much wanting to get rid of these side effects and rebuild some strength. I am on Erleada + Orgovix for almost 2.5 years now. Though I have improved spectacularly(so far of course), my docs want me on Orgovix for life. Though perhaps the Erleada can be removed at some point.
How long did it take for your PSA to go undetectable, and how high was it to start with? That is assuming it did make it to undetectable at all: do you still have a prostate? I don't know if you had a prostatectomy some years before you were diagnosed stage 4, and then had a recurrence? Or you just started off out of the gate with stage 4, in which case surgery may have been skipped?
Also, you said "my onco says i have no prostate cancer in my system after zapping and erleada along with 3 month shots of zoladex.". Did you start the drugs before zapping? Or after? I am asking that because I am curious how long it took you(or anyone else who would like to comment) to become undetectable for PSA after starting ADT. Particularly with drug use only. I am assuming that zapping about the same time as starting ADT would lead to a faster path to undetectable as well as faster regression in size of lesions.
Since I have more questions, I think I have too many. I think I better start my own thread.
Posted 4/8/2024 2:50 PM (GMT 0)
an explanation is in order
my highest point for the initial brachytherapy was 7.8 psa
was 3+4 and 4+3 on theGleason scale
went for Brachy because I know more about radiation and its pluses and minuses' then most ( another story). glad I did as I still have my prostate obviously.
was told when reoccurrence happened a a year or two later, one corner was not killed off. it was a higher Gleason too. 8.9 psa
they zapped that and follow-up's showed nothing at all with 0.1 psa 3 months later
all that time, only was on zoladex.
got called about a year ago, maybe a bit longer, a study was available and she wanted me in the program. i was oldest or one of the oldest in this study on Erleada ( apalutamide)
still took zoladex
however, since over 2 years, all my scans showed negative anything , Pscans, bone scans...
psa .01 or undetectable.
but I was anemic. i was tired, so i told her I wanted to drop out of program on Erleada. she agreed, saying i can always go back on it.
the next day, I felt so much stronger. it was amazing. just one nights sleep!!!
i am going to guess here , but its a least 6-8 months I am off Erleada.
lately, I am feeling again tired. walking one block as i go out for a walk, say 100 steps, i feel it. but I trod on and it gets much better. by the time i get home 20 minutes of quick walking, feel pretty good, knowing in 10 minutes i am napping for 1 hour or less (lol)
any exercise and I need my nap.
I literally have my eyes close on me every 8-9 hours. NAP TIME !!
In my mind, I am still a pre-covid athlete. I played high end racquetball up to then. ( found out i was ranked one year top 10 in the usa for my age at the time. so i was in good shape.
now, i could never last 5 minutes.
so next zoladex shot scheduled for the next few weeks, I am not taking.
my Onco agrees with me and in fact, suggested I go off it and see how things turn out. Zoladex will be in my body for a very long time, although I expect PSA to elevate surely. the question is how high.
time will tell
i hope i added something here to help you . remember, everyone is different.
Posted 4/8/2024 6:30 PM (GMT 0)
Thank you, Racquetball77! May you be able to get off that stuff at least for a long while, and may that result in you regaining some energy! I have the same wish for myself as well.
Posted 4/8/2024 6:36 PM (GMT 0)
now hear this.
when you do brachy, your penis shrinks, almost everyone I heard from.
its hard to find the button.
anyways, i read its because lack of blood, so i took Cialis, I had for the same purpose a few years ago.
2 pills at the same time of day.
yesterday, first day, felt horrible, i slept a lot. just tried, my legs were sore and tired.
this morning after the 2 day of using, everything was GONE !!

i leapt up stairs, not walked. i was amazed. feet and ankles, no soreness.
i am peppier today, no doubt
so just now am taking the 2 pills for the 3rd day
i await tomorrow to see
an expensive way to start the day LOL

its all about the blood flowing through the veins, opening them up wider maybe.

wont tell my wife though (LOL)
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