Anyone have Prostate Cancer Stage 4 with good results?

There are people here in the forum who've passed their 10th anniversary with stage 4 prostate cancer and are still going strong.

I've had stage 4 since 2021 myself, and have experienced no progression since then — my PSA remains undetectable (< 0.01). I had the following treatments:

- emergency debulking surgery to the lesion that was compressing my spine
- ADT (Firmagon, then Orgovyx) and ARSI (Erleada) since October 2021, ongoing
- 20 gy of post-op of radiation (SBRT) to my spine
- 60 gy of radiation (SBRT) to my prostate

The advances in my treatment (vs, say, 10 years ago) are the addition of a 2nd-gen ARSI (Erleada), which significantly slows progression and improves overall survival, and recognising my cancer as "oligometastatic" and treating it aggressively instead of just providing palliative care, as used to be routine for stage 4.

I am under the care of a large Canadian Cancer Centre, but I should acknowledge that our hosts at Mayo played an important role in standardising more-aggressive treatments for stage 4 prostate cancer like mine rather than just "keeping me comfortable."

I know of many people that have had stage four and have lived for many years. I’ve been at stage four for about six years now and had prostate cancer for a total of 15 years.

Everyone is different. What is your Gleason score? What was your PSA when you were biopsied? Have you had a decipher score? Have you had a PSMA pet scan, what did it show? What year did you first find that you had prostate cancer? What is your PSA now?

What treatments have you had? What particular issues have shown that you have stage four? Do you have metastasis in multiple places? How old are you.

Many questions, but it will help figure out whether you have many years ahead of you, mostly due to the quality of prostate cancer treatments these days.

I'm in my 11th year of prostate cancer, 8 of which have been stage 4. My treatments have been aggressive including a few surgeries, most all standard protocol drugs, targeted beam radiation twice, Pluvicto clinical trial and now a full repeat of the 6 Pluvicto treatments. Considering everything, I'm doing remarkable well while staying active, eating well, etc. and living a pretty normal life. I do not pretend I don't know what is around the corner.
My advice is to stay positive, surround yourself with a good medical team, plan ahead and don't take no or let's wait and see as an answer. The attached photo is of a sweat shirt given to be by another prostate cancer friend who wasn't so fortunate, but had an unforgettable determination.

Has anyone’s stage I’ve gone into bones? What are you doing for treatment?

I've had stage 4, metastasized to the bones and 2 lymph nodes since first diagnosis 20 months ago. Started on Firmagon and prednisone, received 10 rounds of chemo. Was on monthly Xgeva shots for one year, was switched to quarterly shots just last summer. Currently still get Firmagon monthly and take Abiratertone and prednisone daily. Can't wait until I can count years instead of just months. Although I complain about the side effects of my forever meds it's still way better then the severe pain I had in my leg before treatment started. I've said before, this site is a blessing to me, to know that I'm not the only one going through this means so much to me. The people on here have been so encouraging to all. Best to all.

It’s called PCa 101- a college course. I like studying it too.

I was diagnosed in January 2014...

Attached is my clinical history, 10+ years.

Mine is a high risk PCa, GS 8, Grade Group 4, rapid PSADT and PSAV, time to BCR after surgery.

As others have said, this is a "fortunate" time to be living with Advanced PCa given the exponential advances in imaging, treatment and most importantly, how the medical community thinks about managing advanced PCa.

Gone are the day of continuous, sequential and progressive monotherapy with single agents, each destined to fail with death following. Now, we combine treatments, bring them forward in the PCa and while the general school of thought is Advanced PCa is not "curable," it can be managed as a chronic disease for many, sadly, not for all.

This "wealth of choices", when to image, with what, doublet or triplet therapy, which ADT, which ARI, which type of radiation, PARP, Radioisotopes, Genomic tests...requires us to inform ourselves and have discussions with our medical team about treatment choices, what, when, for how long...

In those 10+ years, I've packed a lot of living - birthdays, anniversaries, skiing in Colorado, watching my daughters graduate from high school and college and go on to the next phases of their lives, vacations to Iceland, The Big 5 in Utah, Oregon, Glacier, Waterton and Banff National Parks...you get the idea. Next April we're planning a trip to Sedona, AZ with our daughters.

I will never forget the phone call from my urologist with the results of the biopsy, the shock, the "pity party..." Since then, I've picked myself up off the floor, informed myself, made decisions...

None of us are thrilled about treatment, each time I've started ADT and when I started chemo, I questioned myself, angry at what I was doing, knowing the side effects...for whatever reason, the radiation treatments (all 69) have not evoked the same feelings, perhaps because for me, zero side effects and a very short treatment window. Each of us make decisions from a plethora of choices while deciding on the balance between quantity, quality of life, treating too soon, too late, continuous or intermittent..,

So, there is "hope."

For friends, colleagues and acquaintances who now know better than to say "oh, you are lucky, isn't that a good cancer", a sharp response of, that's an oxymoron, say that to the 30k who die of it each year and if you want to get into the details of the side effects of treatment, how much time do you have to talk...!

I am not downplaying his PCa, 30k or so die each year of it, not with it. I have a friend who will soon join that group.

So, we are living in a world today where living with our Advanced PCa as a manageable "chronic" disease is more possible.

Kevin

Radium 223 is one treatment for bone metastasis.

If you don’t have too many metastasis, you can have SBRT radiation to the metastasis and that can kill them. You should also get on ADT and the second level drug like Zytiga.

Are you seeing an oncologist? The best oncologist for prostate cancer is a Genito urinary oncologist, they specialize in prostate cancer Medical oncologist don’t have the time to specialize and keep up with the latest things going on.

You also need a radiation oncologist to handle the bone metastasis treatments.

Going to a place like the mayo clinic can get you the best treatments .

I’ve had my one bone metastasis zapped with SBRT and it has allowed my PSA to stay at undetectable levels for almost a year

I too have stage 4, Gleason 9. Metastasized to hip,left leg bone spine and spots on rib bones. I have had your meds and chemo. I just finished my 6th treatment of Pluvicto. I'm taking daily Abiraterone and prednisone. Quarterly eligard, monthly zometa infusion for bones a daily pill for hot flashes and numerous supplements and vitamins. I found out in December 2020 and stated the treatments and fighting this cancer in 2021. I started out with my PSA at 1,834 and about 10 days ago it was down to 7.9
I will continue the fighting and treatments to be with my family
Best wishes to all of us "fighters" and survivors.

That’s one hell of a road trip. All I can say is the arbiterone/ prednisone got me under control< .01 quickly. Hope it works for you as well as the rear end shot. Bruce