Questions on treatment?: Hi there. I... - Advanced Prostate...

Advanced Prostate Cancer

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Questions on treatment?

Fuzzman77 profile image
24 Replies

Hi there. I am asking a question that there may not be an answer to. I am approaching 8 years from dx from prostate cancer. Very lucky. It has been a long road along with going to India for vaccines. My question is this. I have been through treatments with side effects from profusely sweating doing ADT. I was the first person to do the ADT with chemo. So far everything has been OK so to speak with treatment. Since I was opened up so do the radical prostatectomy about 3 years ago my PSA has stayed at <.01 with treatment. It started at 212 PSA at the beginning. When I got COVID last year and spent 35 days in the hospital I was without treatment for around 3 months. It did go back up to .06 so I know I still have it. It comes back pretty fast for me. I have never had radiation for it and am wanting to know if I went through it if there may be a chance for continued survival. Some of me thinks that radiation may keep it from coming back so fast and maybe even a chance for a cure. I am fortunate to have to ask this. I have also taken ADT along with Keytruda for almost three years now. I have been taking Zytiga for about three years now. Just curious what your recommendations would be for me? Seems like it may be worth the try.

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Fuzzman77
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24 Replies
6357axbz profile image
6357axbz

I scanned your profile and previous posts. I may have missed it but I didn’t see if you have or had distant metastases. Have you?

Fuzzman77 profile image
Fuzzman77 in reply to 6357axbz

It was in the bone and lymph nodes before.

6357axbz profile image
6357axbz in reply to Fuzzman77

Which bones?

Fuzzman77 profile image
Fuzzman77 in reply to 6357axbz

Back, around my neck and a couple other places. Maybe 20 lymph nodes. Everything resolved. Very lucky.

Tall_Allen profile image
Tall_Allen

Radiation of what?

Fuzzman77 profile image
Fuzzman77

You may be right. I thought if they put it where it was I might be lucky.

DarkEnergy profile image
DarkEnergy

"You can follow SOC and let it run up to 2, and do an F-18 or PSMA scan--and if lucky you may find one or 2 spots that you can radiate."

This was our strategy, one step not mentioned was to stop ADT and blood draw every 3 months afterwards. After about 9 months off ADT, my PSA started creeping up as you know (we chatted about this).

At this time, got PSMA scans, which resulted into Oligometastatic disease diagnosis, the left scapula (11/22/21) and pelvis/prostate LN (01/26/22) was targeted by SBRT.

Post SBRT MRIs: "The treated lesion appears stable and there are no new fractures or lesions seen. He remains asymptomatic and his PSA has continued to downtrend since RT to his oligometastasc sites."

Oh well, been watching too much Star Trek, imagined the laser beam (radiation) evaporating the tumors to smithereens - now in a PSA holding pattern.

Schwah profile image
Schwah in reply to DarkEnergy

Are you on any systemic treatments dunce the SBRT?

Schwah

DarkEnergy profile image
DarkEnergy in reply to Schwah

Restarted quarterly Lupron injections - although stopped taking Abiraterone pills. I didn't want to get the injection, wanted to gauge the radiation effect.

But, after debate with my medical team, they reminded me, prostate cancer is a heterogeneous disease and my testosterone levels did not recover while on ADT vacation - consequently no evidence achieved.

Schwah profile image
Schwah in reply to DarkEnergy

I’m confused. Why did you stop Zytega? All the studies show that Zytega combined with Lupron results in extended lives?

Schwah

NotAlwaysSunshine profile image
NotAlwaysSunshine in reply to Schwah

Some men do not get those results from Zytiga. My husband could only tolerate Zytiga for about 4 months. Liver issues.

Schwah profile image
Schwah in reply to NotAlwaysSunshine

Gotcha. What about some of the other options? Xandi etc?

DarkEnergy profile image
DarkEnergy

Yankees, finally no "Primo Uomo" on the team!

Latest PSA on 01/21/2022: 0.13 ng/mL. I've asked to see my oncologist in person, not an assistant, next scheduled visit is in flux.

Whoah fuzz man! I’m happy that you pulled through those 35 days in the hospital . That’s a bit of a miracle . I’m a yr behind you in the dx! ✌️😳

DarkEnergy profile image
DarkEnergy

"And if not lucky you may wind up with too many spots that they cannot get to all..."

Yes, radiation treatment does have its limits, please challenge the PCa diagnosis. And not accept the diagnosis and treatment at first. The PSMA scans are a game changer, locating the tumor spots are paramount. Even when high tumor burden, can still target the large sites (if less the than five - Oligometastatic meaning). Then - there are other ways to cut down the metastasis burden.

My first Oncologist, in the Boston MA area, had me as life expectancy of 2 years. This was almost 4 years ago, today I'm undetectable!

DarkEnergy profile image
DarkEnergy

Yes, Levels < or = 0.01 NG ML-1 is considered undetectable, yes, my bad, forgot to mention my opinion on this. All the best here... :)

DarkEnergy profile image
DarkEnergy

For me from my level of " 0.13" is low respectfully all personal history of my cancer progression is < 0.01

I'm "undetectable", a level that my personal PCa level is not understood?

DarkEnergy profile image
DarkEnergy in reply to DarkEnergy

We have to take account of our progressive cancer burden at diagnosis, this will stage our reaction of care.

raoulmaher profile image
raoulmaher

Hi I think of PC that has spread like cutting the grass and until somebody dicovers a weed killer (cure) for it , it appears to be a keep under control concern as the roots are always ready to regrow ! - I also believe that lessening the overall burden cannot be a bad thing - Less actual live cancer in the body must be good ? - However the caveat from having my own prostate radiated is that radiation can also bring additional cancers I have been told,but these should take 30 + years to develop if they do ! - I hope that the propsed new, off the shelf car-T from stem cells actually comes to fruition as the body knows best ! - I note there are lots of possible break thrus in the pipeline for all cancer sufferers, so hopefully some if not all of us may benefit - I hope this helps kindest Raoul

Nusch profile image
Nusch

I started with ADT and chemo (5 cycles) as well, followed by RP in 2017. PSMA Pet in 2020 with PSA 0.5 showed one pelvic LN, radiated this with SBRT. 2022 PSA went up to 0.4, PSMA Pet was negative. Six months later PSA was 1.1, PSMA showed 3 pelvic LN (2-3 mm) and a small recurrence (0.2 mm). Got 25 fractions of CBCT VMAT to all spots, prostate bed and LN drainage. Almost no side effects. At the end of RT PSA was down at 0.3, next check end of this month. By the way: The spots seen at PSMA Pet are non visible on CT scan - so we can be very lucky that we finally got PSMA Pet.

Point. I had chemotherapy infusions and Lupron/Eligard injections in 2004. Continue killing the little bastards.

GD

Fuzzman77 profile image
Fuzzman77

I talked to the guy from Baylor a couple of weeks ago. They have an old doctor doing the dendritic cells with more added to it (mrna cells) to hopefully make more prone to remission. I was the first person that had that. It may have helped me live longer. It was good while they gave it to me. Hopefully some may get a better jab with how things are working.

goodgoal profile image
goodgoal in reply to Fuzzman77

Sorry. I couldn't understand because of my bad english. Have you had radical prostatectomy surgery after chemotherapy?

Fuzzman77 profile image
Fuzzman77 in reply to goodgoal

Yes, I had RP in September, 2019. This was after a PSA of 212 at the beginning in August, 2014. I did just took off five weeks of Lupron. PSA went back up to .02.

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