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Stage 4 Metastatic - what to expect after 6 months
In November I was diagnosed with metastatic prostate cancer. I had a PSA of 5000, Gleason score of 9, and the cancer had spread to lymph nodes, many bones, and I had small spot on my lungs.
We are approaching 6 months since the diagnosis. I did triple therapy of chemo (Docetaxel), Nubeqa, Firmagon. I've finished 18 weeks of the chemo and have transitioned to Eligard (along with continued Nubeqa). My PSA at last check was 2.2 and PET scans showed no new tumor growth and significant tumor shrinkage.
I will start 28 rounds of radiation on my prostate next week.
I'm 55, have continued to exercise daily, and have changed my diet quite a bit. I'm struggling mainly with fatigue, hot flashes, and some leg swelling.
I'd love to connect with anyone with a similar diagnosis.
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Here’s one
https://medicine.washu.edu/news/surgery-early-prostate-cancer-may-not-save-lives/n
And another to study that seems to find no benefit
https://pmc.ncbi.nlm.nih.gov/articles/PMC3593781/
If you came to an ancan.org Advanced prostate cancer meeting you could find out more, next one is 5-12 at 6pm eastern
@beaquilter I was actually just in sporadic minor/moderate pain — it felt like a pulled muscle in my upper back — but I was rapidly losing my ability to balance while walking. I found out later that the nerves controlling hip ab-/adductors were the first to be damaged, but the others followed rapidly.
My main point is that in my case — and I know everyone's different — 4 1/2 years on ADT hasn't been hell or anything close; just some adjustments.
@prbutler - Similar diagnosis except only one bone met (L5) but too many lymph mets to count in pelvis, abdomen, and chest. PSA well below yours as well. ADT and ARSI since June 2025 and IMRT to prostate in October 2025. Lymph system has responded well to treatment. Prostate and bone not so much. Back to radiation next week for SBRT to L5. Not sure what's up with prostate yet but I'm sure my GUO will hit it with something when I see him next month. Fatigue is a constant battle. Hot flashes still surprise me every now and then, but have calmed down in frequency over the last few months. No legs swelling but then again, I did not have chemo (yet).
Prostate cancer reminds me of adolescent acne. When it flares up, you pop it with something. Sometimes it stays away, sometimes it doesn't. I'm at the sometimes it doesn't part now. Just have to wait and see what they're going to pop it with next. Oh, and adolescent acne probably won't kill you, so there's that.
Hang in there. We got this. 👍
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3 Reactions@jeffmarc
I have no idea - he has one more round of chemo at the end of May.
As far as I know, they will do radiation if he has any painful metastasis going forward.
@mjp0512 It was part of the huge multi-faceted STAMPEDE trial (the radiotherapy branch).
Overall, it was a negative result — the trial found that radiation to the prostate did not improve overall survival. However, a subgroup analysis did find a measurable benefit for patients with low metastatic load (≤4 metastases, none in vital organs):
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(18)32486-3/fulltext
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2 Reactions@northoftheborder - Hi North...Thank you. I've read that trial twice and couldn't recall where I'd seen it. I think I fell in that gray area between low and high volume. Only one bone met but too many lymph mets to count. No organ mets. I was very agreeable with the original treatment plan of doublet plus IMRT to prostate after reading it, and my GUO and I discussed it when determining what we were going to do. (Seems like a lifetime ago and it was only last June) Sure wish prostate and bone responded as well as my lymph system did. Thanks again!
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1 Reaction@jeffmarc - Thanks, Jeff. I've tried to get thorough the Ancan meetings on YT and can't even do that in one sitting. I can't imagine sitting through one live. Just the nature of my personal makeup vs the group dynamic, I guess. Or maybe it's just that one of the greatest pleasures of retirement was I didn't have to sit through these puter meetings anymore. 😁
I continue to scroll thru them on YouTube though, and land on relevant topics often.
@mjp0512
If you watch the videos of the recorded meetings you can speed them up to 1.5 or 1.75 speed and they go by a lot quicker. I always watch meetings at that speed, People talk so slow slowly you can easily keep up.
I was diagnosed with Advanced Prostate Cancer in May 2025 my PSA was 340. Following 2+5 monthly Firmagon injections, that overlapped with 6 docetaxel infusions given every 3 weeks, my PSA was down to 2.07 on 07 Jan 2026. I was put on Relugolix and Darolutamide a month or so before the doxetaxel finished but on 24 Apr 2026, following a PSMA-Pet scan that lit up showing active tumors, my PSA had gone up to 7.6. The PSA was 44 on 09 Jun 2026. I have an appointment on Monday 22 Jun 2026 with one of the top oncologists in the country. I'm hopeful that there will be follow-on treatment.
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3 Reactions@doyleoot Hi,
You don't say how old you are. In my opinion, you should consider a surgery if you are younger than 70.
I had my surgery when I was 68; at 70 I would have not done it.