Well, three years in…..: Since initial... - Advanced Prostate...

Advanced Prostate Cancer

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Well, three years in…..

FulThrotl profile image
6 Replies

Since initial DX of Gleason 4+4…..

at that time was stage 4 high volume metastic disease.

PSA can move up and down quickly. went up 10 points in a week

went down 33 points in a month, without treatment.

i went from NED of disease to PSA of 28.5 in six months.

it’s a spunky little bastard. sorta like me, it seems.

hence the name FulThrotl

current regimen at UCLA:

ADT - lupron + nubeqa

currently approaching infusion #4 of 6 with taxotere this thursday

PSA 0.06

Testosterone <6

i have a urologist, radiologist, neurologist, and oncologist all at UCLA

in playing doctor bingo, they are all department heads. does that win a prize?

now… the question…. i’ve got increasing neuropathy in the feet from

the taxotere. it’s getting worser quicker, as they say. i’m going in for

blood work in the morning in prep for round 4, and am planning on

dropping into see my oncologist.

i’d like to know what i can do for it besides stopping the taxotere.

when we get to the end of the series in july, i want to do a PSMA,

and if i don’t show mets, go off ADT and start supervision.

it’s be nice if i didn’t need a walker at the end of this.

even nicer if i wasn’t dead. taxotere isn’t much fun, but i seem to be

handling it better than other people who are doing this path.

my radiologist put me in a leuticium study, when he started treating me,

as i hadn’t had chemo at that point. lucky me, i got the control arm.

then we did a PSMA, and set up target practice on my mets. zapped 4 of

them, with good success. the PSA dipped, then shot up 11 points in 5 days.

then, we started oncology and chemo.

any thoughts on treating the neuropathy? i’m handling it pretty well except for that.

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FulThrotl
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6 Replies
Boywonder56 profile image
Boywonder56

good job ...taming the beast..keep i goingim 6yrs in gl9..mets.....67..bw

London441 profile image
London441

How much do you exercise and what kind?

dhccpa profile image
dhccpa

How long since you first started ADT?

j-o-h-n profile image
j-o-h-n

To: FulThroat who's a spunky little bastard.

If you're having trouble with feet neuropathy, it may be a good idea to start learning how to walk on your hands.

From: a spunky little pita bastard.

Good Luck, Good Health and Good Humor..

j-o-h-n

Yadifan profile image
Yadifan

My husband was prescribed Gabapentin for his neuropathy. It seems to help. Don't know if you've tried that or it was discussed with your MO but if not you might want to look at adding that.

FulThrotl profile image
FulThrotl

well, spoke to the medical oncologist (goop doctor) yesterday...

asked about medication for the neuropathy. he said that yes, there are things that can be taken, but with pouring taxotere over them, their effectiveness is not much.

so i said.. "you mean it's like snorting a quarter ounce of cocaine, and then taking a valium to cancel it out?"

"well, yeah... pretty much..."

so, i got 16 acupuncture needles in the soles of my feet, as it never even occurred to me to use acupuncture.... i've got three rounds scheduled this week. we shall see how it goes.

my acupiffle wizard also said she was going to balance my right and left wrist pulse, as the right one was very weak, and that is what is causing the excessive urination.

and last night, i only got up once to pee. it's been a long time since that happened. as for the neuropathy, the surface tactile sensation is back today. the neuropathy is still there, but it's quite a bit better. the tactile sensation has been gone a while now.

the goop doctor says we are skipping thursday's poisoning, and see what happens. i'm inclined to skip this one, and keep to the original schedule, and needle away like crazy to see what happens in the meantime.

the blood draw yesterday shows T at <6, PSA at 0.05, and the rest of the numbers are holding steady. some are marginally out of norms, but not severely.

when i got the gooping cancelled, i was so excited i went and looked, and there are backcountry permits available for the maze in canyonlands, utah. so i nabbed one, and booked hotels to and from.....

and then my spouse said no, we can't travel three days one way in a jeep, to an area where you can only communicate with a satphone or a rescue beacon, after you got recess because you are too sick for further treatments at this time.

she may have a reasonable point. just cause there is a place you have to go see before you die doesn't mean you have to die there.

y'all have a nice holiday weekend. i still want to go to utah.

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