Stage 4 Metastatic - what to expect after 6 months

Ancan.Org has online meetings every week with people that have advanced prostate cancer. At least 40 people come to every meeting and there’s a wide range of cancer issues.. There are people that are having the same type of issues you are having. Many people that have had chemo. If you want advice and help on what to do, you should come to a meeting. You do need to install GoTo meeting To attend the meetings, it’s free to download on every platform. You put in answercancer For the meeting name. You can go to the website and watch a previous meeting to see what’s going on. You sign up for the advanced meeting you will get a newsletter every week that has really great information about the latest treatments.

They’ve been helping people for 17 years and have seen just about everything.

stay strong- you are gonna win...the radiation will cause more fatigue but drink plenty of water and make yourself exercise some every day...stay positive...eat good food, get plenty of rest and dont worry..just take it one day at a time..Jeff is the PC guru here..he has helped many of us..

My PSA wasn't as high, and my cancer was oligometastatic (few metastases), but otherwise, I was almost the same age as you (56 in my case) when I got a diagnosis of stage 4b prostate cancer in 2021.

My cancer is in full remission now, 4 1/2 years later. I had surgical debulking (since the tumour compressed my spine and left me paraplegic for a while), post-op radiation to my spine (instead of chemo), and radiation to my prostate.

I've been on ADT (first Firmagon, then Orgovyx) and Erleada (another -lutamide, like Nubeqa) since 2021, and they been successful at keeping my cancer under control. Truly miracle drugs.

I've had to adjust to life without testosterone and to the permanent nerve damage to my spine (learning to walk again from scratch at age 57 was quite the experience), but overall, I'd say life is good as I approach the 5 year mark. But living with stage 4 is a big emotional adjustment, and it will probably be another year or two before the rollercoaster of emotions settles down a bit.

Best of luck! ❤️

Hi
My husband is in a similar boat and I'll tell you what he's been thru since a year ago when he got diagnosed! He went to the dr after feeling like he had an enlarged prostate and just wanted some help with that and also ED (but we had a lot of stress so figured it was that- the ED part) Dr agreed but did a PSA test also, it came back almost 300! Hubby was 55 then and hadn't gone to the Dr since before Covid, we don't trust doctors and are overall very healthy so didn't see the need until then! Oh boy- cancer! It triggered a Pelvic CT scan which showed it outside the prostate, then urologist who said it's stage 4 and that oncology will suggest ADT. My husband would rather DIE than get chemically castrated!! I told him that if I'd have aggressive breast cancer or something like that I'd cut off my breasts etc. I got angry and called him a coward! To me, I'd rather have a tired husband and no sex life than a dead husband and no sex life! We finally met with oncology and got bombarded with information and they wanted to do a PSMA PET scan, on the scan my husband lit up like a Christmas tree! It was everywhere!! Prostate, pelvis, bones, spine, lungs, lymph nodes etc.....He was ready to be DONE..... In the months he waited for the oncology appointment, he had googled everything and taken any supplement he could find, especially I and F and then it wrecked his liver! At this point he had taken maybe 2 injections of Firmagon- it was supposed to be just one, but he didn't like the side effect list of lupron, so the dr let him stay on Firmagon....anyways his liver numbers kept going up- of course he didn't TELL the doctor about I and F! it got to the point of the hospital calling him saying he's in Liver failure, but he felt fine, wasn't yellow, didn't pee brown. But it triggered an ultrasound and a meeting with a liver specialist! THEN he quit all the supplements and when his liver normalized he started Zytiga and prednisone, then over the summer he did 6 rounds of docetaxel and did really well, of course tired and lost his hair, but overall did fine, his hair is more gray now! I think it's sexy....
He works out at the gym every day and eats pretty perfectly!
He had another PSMA scan in the fall after the chemo and there were just a handful of spots left.
Now he's had another scan and those same spots are there but shrunk, but we had hoped for more.
Next week we have a meeting with radiology, he's afraid it'll zap his bladder or bowels, so I think he'll be stubborn again and push back, but maybe it CAN wait another 6 months? I don't know, we'll see what they say
It sucks! but overall he's fine, no pain, looks good etc.... but almost every day he says he's just dragging along, and I see it too, but tell him that all this probably pushed him forward internally 20 years so instead of comparing himself to 55yo men or even younger, compare himself to a 75yo!
We have 4 kids, 2 are young adults.....I know things will work out, that God provides, but it's still scary, how am I going to take care of house and kids by myself after he's gone? Is it 4 years, 14? 24? He may not die of THIS but the meds are hard on the system, so will it be a heart attack or a broken hip and then it's all downhill after that?
Take care and be there for your wife and family!

My husband has a similar diagnosis and story.
He was diagnosed in January. PSA over 900, Gleason 8, metastatic…
He is on triple therapy - Orgovyx, Darolutamide, and Docetaxel. 5 of 6 rounds of Docetaxel as of yesterday.
His scans and bloodwork show the treatment is working as it should. He had radiation on a lower spine metastasis in March.

There isn’t talk of radiation on the prostate itself though? Do you know their rationale for that when the cancer is metastatic? We understood that they typically only treat the prostate directly if the cancer is localized?

I wish you well and hope the rest of your treatments are successful!

@beaquilter You already know my history — no chemo, but months in a hospital bed and wheelchair.

I hope it reassures your husband that I started my cancer adventure at almost the same age as he did (56 in my case), and after 4 1/2 years of continual ADT + Apalutamide, as well as a high dose of radiation to my prostate and a lower dose to my spine, I'm not only living a mostly normal life, but actually managed to learn to walk again, building up different muscles to compensate for the ones that don't get a proper nerve signal any more because of spinal damage.

At 61 now, I can cycle, and I press and lift *almost* as much weight as I could in my early 50s, while I was helpless in a hospital bed, unable even to sit up in my mid 50s. I'm also fully continent, in case that matters.

So radiation and long-term ADT don't have to mean a decline. You can actually get stronger, as long as you're patient and don't push. The cardiologist even cleared me for snow shoveling!

Also, I've survived to meet my first grandchild. That alone made all the struggles worth it.

Your husband is *not* old; he's just a young-ish guy living with cancer. It's different. Don't let him get away with pretending to be decrepit. 😉

@canadaanne I think research so far has showed a benefit for radiation to the prostate for oligometastatic prostate cancer, but not (yet) for high-volume metastatic prostate cancer.

@canadaanne
Recent studies have found that treating the prostate in very aggressive cases has no benefit. Long-term progression free survival did not change.

Over at ancan.org Weekly online advanced prostate cancer meetings they have been recommending treating the prostate to everybody for years. When this came out about six months ago, they changed their tune and no longer recommend it with serious cases like your husband’s.

Ask your doctor about it. It may make sense, it may not. Has the treatment he has already had eliminated the need for it?

@jeffmarc - Hey Jeff...Can you point me in the right direction to the studies that concluded that treating the prostate in very aggressive cases has no benefit? I have an appointment coming up with my GUO and thoroughly enjoy discussing stuff like this with him. Most times he already knows but sometimes I catch him when he's behind on his reading and surprise him. Those are always fun moments. Last happened during our Pluvicto vs TP53 discussion last year. Love the look on his face when I catch him on something new. Just a bit of a game we play.

@northoftheborder thanks I remember your story, it's how you found out? that you were in terrible pain??
He can still deadlift and do stuff around the house. He's just afraid of the unknown.