No Bone Metastisis: I just completed... - Advanced Prostate...

Advanced Prostate Cancer

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No Bone Metastisis

Ldtyson profile image
14 Replies

I just completed the PSMA 68 scan that showed no more bone metastis. I'm being treated at UCSF. My doc said I have a choice of going off my meds of Erleada and Lupron. My concern is if I elect this option and the cancer reappears have I created a worse problem where restarting the meds may no longer help. Gleason 8 score originally.What experience does anyone have regarding this choice.

Dale Tyson

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Ldtyson profile image
Ldtyson
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14 Replies
Tall_Allen profile image
Tall_Allen

No, that wouldn't make you less hormone sensitive. It depends on how much you need a break.

Ldtyson profile image
Ldtyson in reply to Tall_Allen

Are there any other reasons to not stop my meds?

Tall_Allen profile image
Tall_Allen in reply to Ldtyson

No.

Ldtyson profile image
Ldtyson in reply to Tall_Allen

I'm hoping to have a reprieve of the many side effects.

fireandice123 profile image
fireandice123

I’ve stopped meds twice. The first time I stopped Lupron and Zytiga and the second time Lupron only. I’m currently on Lupron only. When I restarted the first time I also had 20 rounds of RT. Details are in my profile. Both times I was still hormone sensitive when I restarted. My PSA fell quickly back to previous levels. The plan with my MO is that I’ll stop again in the near future, assuming my PSA remains low. That’s just my experience. Everyone reacts differently.

It’s a tough decision. Good luck.

Boywonder56 profile image
Boywonder56

Its a form of russian roulett...spin the cylinder takes your chances.....im on same protocol...have been going g on 6 yrs....ive been in this group almost as long and ive seen many ask the same.....and the results are both a toss up.......myself the mo says weve put the pc to sleep thats all......if i want to pke the bear by all means.....its your call......i stick to the plan....just my 2 cents

No bone mets is great! I too was 4+4=8 .. almost 8 years ago .No bone metzs either! Live for today . This thing will hide and wrap itself back around for us all someday . So , any reprieve in the storm must be appreciated .. God bless🙏

London441 profile image
London441

How much do you exercise and what kind?

Ldtyson profile image
Ldtyson in reply to London441

I can't exercise at all due to major back reconstruction and the tiredness that goes along with the cancer drugs.

London441 profile image
London441 in reply to Ldtyson

Not being able to exercise ‘at all’ should be a temporary condition only. There is almost always something one can do.

If not I can only wish you well, for exercise is the best possible antidote to the side effects.

austinsurvivor profile image
austinsurvivor

going on 2 years taking Orgovyx and in 3 weeks will see if I can start my 4th vaca! PSA goes to undetectable and stays there for 3 months or so, then go on vaca, then go back on when PSA goes over 1.5....My MO is highly confident in this approach and I would be miserable without it...

jfoesq profile image
jfoesq

I am 10 years with PC. During my first 5 years I went on 3 vacations. The first was about 20 months from last injection, 2nd was about 12 and the last was about 6. I don’t know if taking vacations made my site worse or not but I have made it to 10 years plus. Good luck.

6357axbz profile image
6357axbz in reply to jfoesq

did you T fully recover by the end of each vacation?

jfoesq profile image
jfoesq

Not sure. I didn’t follow my T

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