Another Xtandi question -- Vacation time?

[ken12491]

Hello --- I've might have asked before but this time with a new twist.

me:

Been on Xtandi since 10/20

Seems to be working according to my MO, PSA holding at 0.7

Asked him about a vacation and he agreed, saying if PSA jumps alot, he could also find a med to bring me back.

I asked him, could I do 1/2 the dose, he said no, ' it's all 4 pills ' or nothing - this didn't make sense but the guy did save me.

Before xtandi I was on Lupron and it was still working, not sure why he put me on Xtandi.

Questions:

My back is really sore and pelvic joints are too.... Normal?

I would love to get some energy back and would take the risk - T levels are so very low...

Any thoughts would be appreciated.

Thanks...

[Tall_Allen]

Be sure to monitor your vacation with MRI. PSA isn't always a great biomarker.

He put you on Xtandi because you've had metastases in your liver.

[ken12491 in reply to Tall_Allen]

thanks

[DarkEnergy]

"My back is really sore and pelvic joints are too.... Normal?"

Our challenge, any bone symptoms are usually bucketed because of our PCa. I found seeing an Orthopaedic or an Orthopedist (bone doctors) may help with "bone" diagnosis - Oncologist's see's everything through a cancerous lens.

My experience, us PCa patients bone scans shows lytic (bone loss) and blastic (bone build up) findings, perhaps we're an older group of patients. It may be arthritis or something not related to PCa.

[ken12491 in reply to DarkEnergy]

thanks..

[ken12491]

thanks

[Schwah]

I agree. I was told by two respected MOs to go 18-24 months. I went 21 months.

Schwah

[westerville]

I used to go on intermittent ADT when Snuffy Myers was still practicing . But since going on the second line ADT I haven't been able to . PSA 0.22 currently .

[Hidden]

Based on my experience (we’re all different) stay on the Xtandi till it stops working. I stopped Apalutimide after 18 months because of crazy side effects...but now I wish I had stuck it out because the monster came back fast and hard and I’ve been scrambling ever since! And now past Xtandi (tried to reign it back in) and have done Taxotere, Provenge, and now doing Jevtana....I’m exactly 17 months out from that decision to stop Apalutimide and struggling to get the beast back under control. The Jevtana has stopped the advancing PSA, but has only reduced it by .5 after the first dose. I’m praying that the Jevtana puts it back into remission...

[EdBar in reply to Hidden]

Hope you can rechallenge the Xtandi after Jevtana, there’s a significant number of guys that this works for. The Jevtana resensitiszes your cancer to Xtandi.

Ed

[Hidden in reply to EdBar]

Hi Ed, I plan to give it a try. Whatever it takes!

[EdBar]

Ken12491, didn’t you ask the same question about a month ago? The Xtandi dose you are taking is not all or nothing as your doctor says, many guys do fine on a half dose, me being one of them. If you look on the internet you’ll find some information on this you can present to your doctor. I even recall it being discussed in a video by some of the experts on a panel at an ASCO conference back when they would meet in person. Perhaps your doc needs to do a little research.

Ed

[ken12491 in reply to EdBar]

thanks ed... see him next week...

[Shooter1]

I too am on 1/2 dose xtandi. Full dose made me an invalid with no life.... So far so good. Or so so PSA starting to creep up and alk phos also climbing. Onc. appt tomorrow.. 4 yrs into what drs said would be a one yr run.

[nonm in reply to Shooter1]

what's behind the fact that Doc prefer to give a prediction numbers that is less optimistic than normal ? maybe a silly question…

[Shooter1 in reply to nonm]

Don't know, but I have seen some guys sign in here with nothing worse than me who were gone in a year. So they just give what they have seen happen in worst case I guess. With me, when questioned in detail, my oncologist admitted I was the only patient he had whose PSA jumped 10 pts from RP to 6 week checkup. Pathology report sucked.

[ken12491 in reply to Shooter1]

thanks

[monte1111]

Got psa today <0.1 That makes three and a half years Xtandi. (8 cycles chemo, lupron, xgeva) I have bone metastasis though, no visceral organs. Guess this doesn't help much, but wish you the best.

[ken12491 in reply to monte1111]

thanks

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

Mixed bag...............

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/27/2021 11:50 PM EST

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

Looks more like a green scrotum. Guess the Viagra didn't work.