I just started year 5. I'm doing relatively well in the sense that I still work, I'm relatively pain free and I'm able to do most things (besides sex) like I've always have despite the hotflashes, fatigue and all the other treatment sideeffects.
My last four PSA results where:
Aug: 272
Sep: 132
Oct: 118
Nov: 157
Needless to say, last months jump gave me some anxiety. I am currently on Darolutamide and Orgovyx.
How are my stage 4 De-novo Gleason 9/10 doing?
We are all kinda mixed together in here and it's difficult to read into favorable or unfavorable results because our aggressive disease burden is a category within itself. Perhaps, it may even warrant a new group to be added to malecare.
But for now, I'm asking for a role call from just those of us on here that were dx stage 4 with a gleason 8/9 or 10 from the jump.
1) Do you still have your prostate?
2) What year are you in? (or if passed can partners chime in on how long their significant others made it.)
3) What is your Current Treatment?
4) Is there anything else you do to battle this disease that you feel has helped?
Thank you, GOD BLESS.
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No_stone_unturned
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My husband was Gleason 8… had RP in 2017. We were told all contained… no spread outside of prostate etc. Yet within 6 months PSA began rising …. And we’ve been in the fight ever since.
Have you had Genomic Testing?
A year After surgery…. He did 39 rounds of radiation and was on Lupron for about 18 months.
PSA keeps rising … and has been on various drugs since… but none worked for long.
His last treatment was Doceataxel Chemo. After 3 rd infusion… PSA began rising.
He is beginning a clinical trial … if all works out ok… within the next couple of weeks.
Highest his PSA has gotten is 47.
He has had several PSMA scans… with rising PSA… but all were negative! After several months of begging for another type scan, they did an FDG … CAT/PET whichever it is called… and it lit up like crazy! So frustrated with Well known oncologist who put way too much emphasis on PSMA scans. 10% of PC does not emit PSMA… thus his negative scans!
My 66 year old husband was diagnosed 5/22 Gleason 9 with distant bone mets. He entered a phase 2 clinical trial ARASEC (using only Lupron and Darolutamide) which led to nadir at 6 months and continues. He did get both germline and somatic testing and found the CDK12 mutation. We don't know what challenges that mutation will present in the future but for now we are keeping life very simple as his weakness and fatigue combined with other unrelated health problems present ongoing daily challenges.
I did several AI searches for stats on de-novo patients. I will share the results with you, however this forum doesn’t allow the ability to post multiple images in one reply. Therefore there will be several replies to post them. Apologies got the extra clicking.
I don't fit your question- not de novo. But after prostatectomy in July 2017 my PSA was still detectable. A pet scan revealed multiple bone Mets. Cleveland Clinic upstaged my tumor to Gleason 9. Started Lupron plus Zytiga ( abiraterone). Immediately went to undetectable. 4.5 years later still <0.01. So in June 2022, I stopped my cancer meds. Still <0.01. Not surprisingly I feel stronger and better. I know there are others like me. Best to you.
Yes and Willy still performs at 8/10 (not 9.5 anymore). Cialis helps.
2) What year are you in? (or if passed can partners chime in on how long their significant others made it.)
year 3 -4. Aiming for 5 - 7 but who knows?
3) What is your Current Treatment?
Eligard and Estrogen for hot flushes (works) and bone health. I have taken some breaks from Eligard of 3 months or so. Elevates PSA from 12-15 to 45 ish. No symptoms in breaks except better health from Testosterone being elevated.
4) Is there anything else you do to battle this disease that you feel has helped?
Acceptance that it will kill me so dont waste time looking for a silver bullet (miracle treatment etc). Use the time to (in my case to Kitesurf, surf, Foil, run. snow ski, ride motorcycles, work enough etc).
Associate with the right people: When I go to Dr's office I notice lots of sick or dying people. If I went to a mechanic and saw a lots of broken cars I dont think I would frequent the place. Am I unusual in noticing potential cause and effect?
Keeping fit. People still regularly comment they want to be as fit as me, even though they are generally 20 years younger. I dont tell people I have cancer. Why? Are they going to cure me, offer me helpful advice, know a miracle cure they their uncles brothers dog had and it worked?
Diagnosed Gleason 8 with "extensive" metastases to my pelvis, lower spine, and right femur with small lesions scattered over my rib cage and tibia, just before my 63rd birthday.
,Specific answers:
1) I still have my prostate.
2) I was diagnosed mid August, 2023, so three months into year 2.
3) I started triplet therapy with Lupron, Nubeqa, and docetaxel. My last docetaxel infusion was in late February. I switched from Lupron to Orgovyx 7 weeks ago when they realized that I wouldn't miss doses.
I started taking Celebrex and Veozah a couple weeks ago to deal with joint pain and hot flashes. Both have given dramatic improvement.
4. I take very long walks. It is amazing for my mental, as well as physical, health. Other than that, I'm living life as normally as possible and letting the medical treatments do the work. My PSA was undetectable within 3 months of starting ADT.
My husband still has his prostate gland. 15 years, see bio. Currently <0.01, Prolia only treatment for the cancer for the last couple of years, hydrocortisone and adrenalin for the Keytruda permanent side effects.
My husband was diagnosed in March 2022, very stage 4, Gleason 10, 20% neuroendocrine involvement.
He has had prostate and hip EBRT, Lupron and Apalutamide. He had a very slow reduction in PSA from 1120 to undetectable around 8 months ago.
His oncologist keeps saying things like ‘remarkable’ and ‘super responder’ (I’m not quite sure what he is trying to relay here but my husband likes it).
He is still doing everything he was before diagnosis, albeit a little slower. I think what keeps him going is denial. He avoids knowing his disease, outcome etc., but I feel this helps him to not dwell and to get on with his life.
Gleason 8, mets in lymph nodes above and below diaphragm, clear on bone scan
I hear you with the disease categories, I think it’s the nature of the internet beast
1. still have my prostate, it was nuked for 5 or 6 weeks
2. coming up on year 3
3. lupron, 250 mg aberaterone, 5mg prednisone
started on 0.05 estradiol patch weekly for flashes, bones and anxiety this summer
4. I eat my meds with my oatmeal and walk 40 to 60 minutes afterwards.
I start to feel like a human after the walk and after lunch actually feel good,
I use to walk in the afternoon and didn’t feel nearly as good. The first year and half on lupron a lot of days I felt like hell until couch time, but since switching my walk time after breakfast most days I’m good to go
I throw some weights around twice a week, which I hate
I’m turning into my grandmother, I’m OK with that, some brainwashing also helps with music and my telenovelas , trying to have a positive attitude and not to dwell on the C
I’ve been dealing with it quite a while. Diagnosed 2012 de-novo metastatic with spine mets on bone scan. PSA 20.
1) Do you still have your prostate? Yes
2) What year are you in? (or if passed can partners chime in on how long their significant others made it.) year 12!
3) What is your Current Treatment? Just restarted ADT after a 7 year break Initially radiation to prostate and bone Mets, plus ADT. Had a few breaks from ADT and stereotactic radiation Chemo in 2017 knocked it on the head for quite a while Played “whack a met” with stereotactic radiation a couple of times until it seemed pointless, so piled the trigger on ADT again
PSA got up to 2.1, currently 0.7,but due for another test this week
4) Is there anything else you do to battle this disease that you feel has helped?
Keeping up with all the latest research so I can ask intelligent questions about treatment options.
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