A new chapter: To recap: Dx w/G9 PCa at... - Advanced Prostate...

Advanced Prostate Cancer

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A new chapter

shueswim profile image
18 Replies

To recap:

Dx w/G9 PCa at age 58 in 2016

RP June of '16. Positive margins, so followed up with adjuvant RP and ADT. Two years later, BCR with 2 month PSADT.

PSMA 18F-DCFPyL scan in clinical trial discovered recurrence in 4-5 pelvic LNs.

Began ADT & abiraterone in Jan. '19, followed by RT on LNs. Continued ADT/abiraterone combo through yesterday. PSA has been undetectable since ADT began.

My plan of attack was formulated 18 months ago by my local RO and Dr. Zietman at MGH with the intent of being curative. I've essentially been on autopilot as that plan was executed and haven't really give the PCa much of a thought. T levels at zero for 18 months isn't pleasant, as many of you know, but it's tolerable. Last month was (hopefully) my last ADT shot and yesterday was my last abiraterone tablets. Now...we wait and see if I got lucky with this course of treatment. At the very least I'm hoping for some time period in which my T levels rise and the PCa doesn't recur. I must admit however that I am a little nervous as this new chapter unfolds.

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shueswim
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18 Replies
Bethpage profile image
Bethpage

Wishing and hoping with you for all the luck in the world going forward.

Blueslover profile image
Blueslover

Best of luck Gene. Sounds good!

My PSA has risen to 2.1 on Lupron. Having my second (of 3) Provenge treatments this week, then will probably be started on a secondary ADT drug.

Hugh

rust profile image
rust

Shueswim, you have persevered through much and also been my friend and advisor pointing me towards a possible curative /or longer term remission therapy. I had similar therapy but with taxotere but no abiraterone and PSA still declining steadily and at 0.1 on leuprolide. If I were CAB mine would no doubt be 0. Unidos estamos.

Tall_Allen profile image
Tall_Allen

It was a very good plan - I hope it works. I trust you are slowly weaning yourself from the prednisone.

shueswim profile image
shueswim in reply toTall_Allen

I was concerned about that so I asked my MO that specific question. He said that because it was only 5 mg there was no need to wean myself. Do you believe otherwise? Today is the first day that I've not taken abiraterone since Jan. '19.

Tall_Allen profile image
Tall_Allen in reply toshueswim

Some guys I know went down to a pill every other day for a couple of weeks, then 2 pills a week, then off. Why take chances on a BP rise?

shueswim profile image
shueswim in reply toTall_Allen

Agreed...let the weaning begin.

Sounds like a good plan 🙏. Turn the page on this next chapter!

Bodysculpture profile image
Bodysculpture

Very good result

Let's keep this going

Very inspiring

TJS-1 profile image
TJS-1

Fingers crossed for you! I’m following a similar Tx plan, but with less total time on ADT after LN treatment. My T has been taking 6 mos to show any rise after stoping ADT. How long were you on ADT with your adjuvant RT course?

shueswim profile image
shueswim in reply toTJS-1

Only 6 months. A friend, that I met through this community, was on a parallel course back in ‘16. He was being treated at Dana Farber and they kept him on ADT for 12 months. 4 years later he’s maintained an undetectable PSA. Was the extra time on ADT the difference? Too many variables to know, but in hindsight I would have extended the ADT as an extra measure. This time around I was told 12-18 months on ADT...I went with the longer duration.

TJS-1 profile image
TJS-1 in reply toshueswim

Yes, hindsight can be a bear! I hope your Tx path is successful/curative, and that you will still update occasionally to let us all know.

MateoBeach profile image
MateoBeach

Great chapter. Enjoy the uncertainty as well as the possibilities. That is the flavor of living life on the edge.

BTW have you read the Summerset Maugham book “The Razor’s Edge” or seem the great movie with Bill Murray? Inspiring.

shueswim profile image
shueswim in reply toMateoBeach

Great perspective. No I haven’t read the book or seen the movie...but I will now.

Magnus1964 profile image
Magnus1964

Good luck and keep up the good fight.

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

Make shue you keep on swimming.............

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 06/30/2020 2:40 PM DST

RonnyBaby profile image
RonnyBaby

I sense that an ADT holiday is something you are hoping for.

The numbers make that scenario possible - if the numbers go / stay in the right direction.

I have been on an ADT holiday for about 2 years - and it was a welcome relief for the time being - feeling and being more like my old self -- BUT - it looks like my holiday is coming to an end.

My PSA was at 1.3 about 2 months ago - and rising - so I am looking at plan 'B'.

I had a miserable time with Lupron, so, monotherapy Casodex is being seriously considered.

My G9 / T3b (Dx ~3 years ago) refers .....

immunity1 profile image
immunity1

All the best for total cure! But all is not lost if it is not so. My history is similar (see personal notes) with Gl9, stage pT3bNoMo in 2010. My strong suggestion if/when it reappears (rising PSA) have a PET PSMA done while the lesions are soft tissue, with a view to having Lu177 PSMA treatment. Expensive, inconvenient as not in US yet but can slow pregression.

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