Did not see that coming.

[APK3]

Hello to all, Dx 11-1-23. Went in with urinary situations and came out with a Turp and stage 4. had a Psma pet scan ..Mets here and there . So high volume I guess. PSA was 139 ..MO says triplet therapy ....seems like I'm pretty far down the road... I know I gain by doing the therapy but on average are we talking months?years? Thx for any feedback.

[witantric]

I know it is hard to do. Get into mindfulness. Just think one step ahead. Everyone reacts to treatments differently. There are folks on this site living with stage 4 for decades. Here is to you making to 100. God bless 🙏

[APK3 in reply to witantric]

Thank you. I appreciate your response.

[Hidden]

I know this is all new but you should make sure your dr orders a genetic test on your biopsy tissue. If it harbors certain (relatively rare) traits there are immunotherapies available to you that can have miraculous results.

Genetic testing has all these odd sounding acronyms. Things like MSH (Microsatellite instability high), TMB (tumor mutational burden high) and several others make your cancer treatable with things like Keytruda and other immunotherapies

[JohnInTheMiddle]

Triplet therapy! In April I will be 2 years on triplet therapy. Surprise diagnosis after 6 months of backache progressing to crazy pain. High volume to a few lymph nodes and skeleton especially the spine (some of the pain was related to masses pressing into the spinal canal space - and I have three compromised vertebrae requiring me to be careful around certain movements - but fortunately no organ involvement. PSA was >1700 (correction number previously I had the wrong number much too low 😃). PSA now zero. Apart from fatigue life is "normalish" - partly because it was too late for destructive surgery or radiation.

(One important thing I've learned is that with metastatic prostate cancer I'm actually fighting three battles - cancer itself, therapy-exacerbated CVD disease, and cancer-driven skeletal risk exacerbated again by PCa therapy.)

My ADT is Degarelix/Firmagon which is a GnRH "antagonist" originally prescribed because it is a fast acting - but I have deliberately stayed on it despite enticements to go to the "more convenient" 90-day ADT - a GnRH antagonist has a better CVD profile.

The other parts of my three-legged triplet therapy stool are Docetaxel (read up on fasting for 2 days around the administration) and Abiraterone (ARPI). I've also learned about the importance of exercise and not only for quality of life.

By the way,I'm curious if your physician ever had you do a PSA test? (I wrote about the scandal of the bias against PSA testing elsewhere on this forum.)

As for longevity, which naturally is the big question after diagnosis of high volume metastatic hormone sensitive prostate cancer, I was very worried at the beginning. This is a terminal diagnosis. And there's a lot of things you'll read and people you'll talk to and they say "my uncle lived for 20 years with prostate cancer" - and there's a widespread and even lazy misunderstanding that "metastatic prostate cancer" and "confined-to-the-prostate" prostate cancer are the same thing. They aren't. They are two completely different things. I've stopped going to any support groups that are not specifically targeted to metastatic.

In the beginning I was terrified and shocked of course. I'm an older dad but my wife and I still have a teenager at home. And right away on diagnosis my doctors hooked me up with palliative care! (Palliative could be great - but not yet please.) Aside from ongoing and variable fatigue I'm still hoping to re-engage with work.

So now the big question about time left. I have calculated, based on my original pre-cancer life expectancy, that I will probably lose between 11 and 19 years of life. Took me a long time to move beyond this sadness - and anxiety in terms of the impact on my family.

At the beginning of the situation and given the specifics of the diagnosis and before the decision for triplet therapy, I think my doctors were pessimistic.

Okay here are the stats - for high volume metastatic PCa apparently only 30% get to 5 years. (As it takes a while to collect stats, these numbers are probably out of date!) I was not expected to be in that 30%. And of course that's quite a broad distribution and some people have much less time than 5 years. But I responded well to triplet therapy so far and I'm able to maintain exercise so I'm feeling that maybe my odds could be evolving in a good direction.

Here's a different interesting statistic - apparently as much as 30% of deaths for men with metastatic prostate cancer is the direct result of cardiovascular disease and heart attack and stroke etc., in part driven by ADT etc.

I have written elsewhere here about exercise and it is astonishingly important. I also take a few supplements. Did I mention exercise? I am now more optimistic than I was at the beginning.

If I was more thoughtful and prudent maybe I wouldn't have shared the above statistics. But you can find these numbers in reputable places.

Bravo your MO who right away has suggested triplet therapy. Triplet therapy is not standard care everywhere yet. A big success in your decision-making and short-term outcomes. And then as much as possible or return to semi-normality !

[APK3 in reply to JohnInTheMiddle]

Thank you John for your response it was helpful and encouraging.

[Kaliber]

no one knows when the axe will finally fall. In aPCa business it’s hard to say. What the doctors say is only best guess statistical information.

When diagnosed, my PSA was 1400-1600 and my table full of doctors told myself and my wife that I had only a short time left and I should enter inpatient hospice immediately. Instead I started adt ( Lupron Xtandi Zometa ) and now it’s 64 months later and I’m not pushing up daisies yet. Plus feels like I might hang in there a bit longer too.

Some guys go quickly seems like …. 18-24 months or a bit less , many guys here have been going 7-14 or more years. The point being you can never know for sure. I’d guess , after a while …… depending upon how you are holding up , you’ll start to get a feeling for your potential longevity. Prolly takes a while tho.

❤️❤️❤️

[Leps]

My PSA was over 2,000 when I was diagnosed. I didn't expect to live long. Now I'm celebrating my fifth year. I'm alive because of modern medicine and insurance to pay for it, good luck, and who knows why. You could check my profile to see a sample of treatments that likely will be available to you and note the fact that some treatments work and some don't. My radiation oncologist told me the thing to do is to hang in there, stay alive, because a cure is coming. Today I feel as well or better than I did three or four years ago. I hope you do well.

[Tall_Allen]

Many years.

[witantric]

One thing to keep in mind. Everyone responds very differently to treatments. We don’t know exactly why, but maybe genetic disposition plays a role.

[APK3]

Thanks to all for the info and for taking the time out of your day to respond. It is appreciated.

[GoBucks]

Don't let anyone tell you how long you have to live. No one knows. You could be struck by lightning -a far better chance than winning Powerball. First you get hit in the gut with a baseball bat(cancer diagnosis). Then you get hit again over the head (metastisis). I have been there too. Learn about mindfulness. Exercise and then go for a walk later. I responded well to my doublet therapy (lupron + Abiraterone). Believe that you can respond to your treatment . And finally, don't forget to eat ice cream. Best of luck.

[Peeffervescence]

I finished triplet therapy last April. I took the summer off and then did EBRT in September/October. It’s all over now and I’m glad I did it. Was it unpleasant? Hell yes. If I had it all to do over would I? Hell yes. I’m stage 4, Gleason 8, with a starting PSA of 52. I plan to be around for a good long while. My current PSA is < 0.006 which is “undetectable” on an ultra sensitive machine. I’m glad I gave myself that chance.

[Amadeus71]

Exercise. When I was diagnosed late 2021, I decided to get 2nd and 3rd opinions. Each MO stressed the importance of exercise in addition to meds/chemo/radiation. Exercise helps to minimize side effects of treatments and maintain bone density and muscle mass. Resistance/weights, cardio, yoga, etc, Mix up the routines so you don't get bored.

[Woodstock82]

I was stage4b at diagnosis (details in my profile). That was four and a half years ago, and I am still doing pretty well.

[Pinkyboy]

Good morning APK3! My story is so similar to yours: stage 4 (scattered bone mets) diagnosis in May, TURP procedure, and began treatment. While my PSA wasn’t as high as yours (24.4 at diagnosis) my Gleason score was sky high at 9. I am pretty sure we have the same thoughts, questions, and worries. I am 84, even so I am hoping for several more good years. I get Lupron every six months, take Nubeqa daily, and have had four rounds of Docetaxal. It’s good to know that you and I are not alone; this forum is a valuable resource of information and encouragement. Here’s wishing you many, many more really good years.

[APK3]

Thank you gentlemen for the encouraging words this morning.

[JGK2023]

my PSA was 105 and I was given 18 months. With Radiation and ADT and later salvage cryo it has been 18 YEARS! Now ADT resistance with metastasis I have done Provenge and added Xtandi (very expensive in the US). Will see how things go after radiation to the bone Mets but holding off on chemo as long as possible and may decide not to go that route. Bottom line is everyone has a different path but don’t be discouraged as long as you feel good.

[j-o-h-n]

S.O.L. Unfortunately I can't make a prediction on your months or years because the government recently confiscated my Crystal Ball when they saw the prediction for 2059. In the event you're interested in the prediction , it was:

"Ozone created by electric cars now killing millions in the seventh largest country in the world, Mexifornia, formerly known as California."

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 12/27/2023 5:55 PM EST