Introduction : Age 67 - CyberKnife June... - Advanced Prostate...

Advanced Prostate Cancer
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Introduction

Lord_Vetinari
Lord_Vetinari

Age 67 - CyberKnife June 2014 in CA after GS of 7. PSA stayed low till just after moving to KY in March 2017 - presumably NOT cause and effect 😂. Current PSA 9.1. Health Insurance refuses to pay for Axumin scan - diagnostic and not medically necessary 🤯. MRI guided prostate biopsy - clear. Two lots of CT and bone scans - first clear, recent CT clear but bone scan shows possible metastases on spine and chest. Off to Stanford Jan 14 for Ga68 scan. So far watch and see but probably starting ADT soon - anyone have experience of surgical castration? Seeing radiologist Jan 1

No pains, no symptoms yet.

16 Replies
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Personal choice, but with ADT for life or surgical castration, I chose the knife. No regrets. No shots for life. No option of Intermittent ADT anyhow and no real advantages shown to receiving such treatment. Obviously T now undetectable. PSA holding at at 0.125 range for last 6 mo, 0.140 for 5 mo previous. They have moved my expiration date ahead. (since I've already past their original estimate) On reduced Xtandi dose also.

Congratulations on extended expiration date 😁. Any problems with the Xtandi?

Many serous problems with Xtandi. Full dose= no balance, numb hands,wrists, ankles, feet, dead toes(couldn't move toes at all), face and butt unfeelable (darned hard to wipe my butt), and two hands to lift glass of water which still leaked out corner of mouth. Then the serious ones = Eye sight deteriorated 20/30 to 20/200, 24/7 belly pains from moderate to sever, double you over pain. Wife had to shower me while I held shower rod. Zero strength and stamina. Couldn't even open water bottle or lift 2 liter soda bottle let alone pour milk into my coffee. Lost skin on entire body (looked like the old pig-pen comic kid with cloud of shed skin). No finger prints. Daily shower and full body rubdown with udder balm from Ag. supply store.

You might say I had some problems with Xtandi.

Cut to 120 mg. Improved. Cut to 110 mg. and after 6 weeks was able to go back to work as RR Engineer ( needed help from conductors to get my gear on and off train). Cut to 100 mg and started healing. Cut to 90 mg. (current dose) and have a life again. Perfect?? No, liveable and able to do things , yes. Split fire wood today, made double batch of cinnamon rolls, and bread for wife do make Beerocs.

Time for beer. Don't be afraid to tell Dr's "NO" when they want you to stay at toxic levels of some meds. Got to have QOL to consider.

Sounds hellacious. Thanks for the info and “cheers”.

monte1111
monte1111
in reply to Shooter1

Surprised they still have you on xtandi after all of those side effects. Sounds just horrible. You can't switch to zytiga? Hard to believe you are still working. Love the beer rocks and love the beer. Careful with the wood splitting if you got bone mets. Spinal compression sucks. Took out insert and put in gas fireplace. Not a money saving move, but warms the buns and the cats just love it.

Shooter1
Shooter1
in reply to monte1111

Bought wood this year. First time. Always cut my own, but not safe with heavy chainsaw right now. Retired first of Nov. Upper management was happy to see me go.

monte1111
monte1111
in reply to Shooter1

Retired for the holidays. So cool. Upper management doesn't matter any more. You were happy to see them go. Hope you get to pick up on some of the railroad retirement perks.

j-o-h-n
j-o-h-n
in reply to Shooter1

Man Shooter, you really shot your wad.... Glad you're back to "so called" normal...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 12/19/2018 10:41 PM EST

Stanford will be starting soon a new clinical trial of an even better PET indicator (DCFPyL). How much are they charging for it?

clinicaltrials.gov/ct2/show...

They are charging nothing for the Ga68 trial. In fact I think they pay $250.

i have medicare/aarp and they pay for mine other then zytiga found a foundation and they paid for it that's all i know for sure for me

Am not an American citizen. Insured through wife’s - who is - company insurance - Anthem Blue Cross who reject most, if not all, PET scans.

So where are you located? And where are you being treated?

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 12/20/2018 7:24 PM EST

Sorry for the tardy reply. Located about an hour’s drive SW of Louisville KY which is probably where I’ll be treated.

"God's country" Thank you... and Merry Christmas.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 12/23/2018 2:03 PM EST

Huh. Im a rr engineer too. I went for dissability as i had bad SE from xtandi. Im not sure if i could get up on the engine now even after dropping dose to 2 caps. I sure would like to work but lost most of the sight in my right eye which wont go over good at medical.

Good luck !!!!!

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