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The long middle stretch

Prostate Cancer | Last Active: Oct 2 10:11pm | Replies (23)

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@wooldridgec

This is great news and I am super happy for you. Would you please consider providing some details about your current diagnosis. For example, upon diagnosis what was you PSA? Are you stage 4 de novo? Where did the cancer go - bone, lymph, organs, or a combination? Are you high volume or oligometastatic (few metastases)? What was your treatment and medications? Did you do triplet therapy? Did your treatment include radiation? Did you have any genetic or genomic testing done? How fast did you get to undetectable?

I have passed the 2 year millstone and with the grace of God will be where you are in about 9 months. I get Xgeva every 6 weeks and an Eligard shot every 3 months. So, my blood is pulled every 6 weeks (i.e., PSA, Testosterone, etc). I asked my doctor when she thinks I can relax and we could spread the tests and she basically said never. It was very upsetting to hear. It sounds like your doctors is very positive about your recovery and the prospect of you OS.

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Replies to "This is great news and I am super happy for you. Would you please consider providing..."

"Would you please consider providing some details about your current diagnosis."

Certainly. I was diagnosed stage 4 oligometastatic with a spinal lesion at T3 in 2021 (PSA 67). MRI, CT, and a bone scan showed no other metastases. The lesion rapidly compressed my spine until I was paraplegic, and it was 9 months before I could use a walker for short distances, and a year and a half before I could walk without a cane.

I had emergency debulking surgery on my spine to decompress it, 20 gy of post-op SBRT radiation therapy to the spine 4 weeks later, and 60 gy of SBRT to my prostate 6 months later (which caused some mild radiation proctitis and cystitis).

I started on Degarelix (Firmagon) and Apalutamide (Erleada) 2 or 3 weeks after I was diagnosed, while I was still in critical careb(I switched from Firmagon to Orgovyx six months ago). I think they recommended Erleada partly because it doesn't give an initial testosterone surge (which was important in my precarious situation at the time). With the surgery, initial radiation, and medication PSA fell rapidly to 19 in a month and undectectable (< 0.01) in less than three months, where it has remained for nearly 3 years — this happed before I had the radiation to the prostate itself, which was just for extra safety.

Nobody can say for sure what my long-term prognosis is, because my treatment is too new to have long-term data. The TITAN study for Apalutamide and ADT didn't reach median overall survival after 4½ years, and that included much-more advanced cases that mine, so that's a good sign. My previous radiation oncologist said other patients who've responded as well as I have to treatment (in general) have sometimes gone 10 years or more with progression to things like chemo.

Initially they had told me to expect to live about 5 years (7 at the outside), with progression in 18–24 months. Now, obviously, they've modified that considerably, and they no longer even try to give me an exact number; just "lots of years."

I hope that's helpful. I can't give you any more-precise info because prostate-cancer treatment is advancing faster than they can collect data on it.