Post-treatment update

Posted by scottbeammeup @scottbeammeup, May 22 9:29am

It's been a year and two months since I started treatment (Gleason 7 4+3). I had three months of Casodex and Lupron with 5 sessions of SBRT two months in. I switched to Orgovyx halfway through when Lupron became intolerable. I was in a bad place mentally but people on this forum REALLY helped me--THANK YOU!

Urinary issues disappeared 3 months post treatment. It was too painful to ride a bike but this spring the pain is gone and I resumed my 30 mile rides, which has improved my mood tremendously. Never had bowel issues.

My PSA and testosterone were undetectable on ADT. My first testosterone/PSA test three months post Orgovyx was .1 and 350 T. Six months post Orgovyx my T dropped into the 200s but PSA is now undetectable.

My oncologist says T supplementation is a NO but my sexual health doctor says supplementation after a year is fine if my T keeps declining.

About a month ago, spontaneous "morning wood" came back and my libido is increasing. My penis length is better than while on ADT though still shorter than before. I was anorgasmic but that's also improving. I'm a data nerd so track my mood, sleep and sexual function (needed 100 mg Viagra right after treatment but just 20 now).

This year I've felt good 97 days, mediocre 29 and sad or suicidal 14. I'm socializing A LOT more which is helping.

My sleep still isn't great. 50 days of poor sleep (< 4 hours), 70 mediocre (4-6 hours, waking up 3-4 times) and 20 days good (6-8 hours, waking up only once).

Out of 72 times of partnered or solo sex I've had good orgasms 33 times, moderate 19 and none 20. Unfortunately, I can't reach orgasm through sex anymore and have to finish manually. I'm currently doing five weeks of pelvic floor therapy to see if this helps. I'm in week two and so far no change.

In short, doing better and hopefully will keep improving over time. T dropping is concerning but I think my medical team can help. So much of this is just a waiting game.

Again, everyone here has been so helpful and understanding and my thanks for helping calm me down when I was at my worst.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@surftohealth88

I was "eying" Quebec City for 5 years now *sigh, dreamed about retiring there (somehow lol, tough luck getting permanent residence without much effort or ever XP). Well, not the first or the last dream that had to be put on a shelf indefinitely ;).

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Many retired Canadians own condos in Florida or Arizona and spend 4–5 months/year there (well, fewer now — they've been selling up recently). The same would probably work in the other direction without the need for permanent residency status.

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@northoftheborder

Glad you enjoyed it, Phil.

And a travel tip for visiting the province of Quebec: if you walk into a business and someone says "Bonjour, Hi!" they mean "I can serve you in French or English; which would you prefer?"

You signal your language choice by answering "Bonjour!" or "Hi!". There's no obligation to reply in French unless you prefer. If they say just "Bonjour!" and you're not comfortable in French, it's still OK to ask if you can talk with them in English, but they might not be totally fluent (or they might be using exclusively French for political reasons, though that's rare in the younger generation).

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If the business person speaks English, he/she will be pleased to speak the language with you. Else, may refer you to an English-speaking associate.
I had a somewhat "unique" experience with professionals from Quebec, many years ago.
I was attending a Canada regional conference in Toronto, Ontario. We were provided with headphones (for some of the sessions) because the speakers/presenters from Quebec wouldn't speak in English. We had to listen to the simultaneous translation while the presentation was going on.
A few years later, I attended a similar conference by our US-bheadquartered professional association. The new venue was in Montreal, Quebec. All the speakers spoke in English. I asked the Quebecois host, why when they were in Toronto, they spoke in French and we needed translators? He said, "Because we are from Quebec."
And why you presented now in English? "Because you are our guests."

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@vircet

If the business person speaks English, he/she will be pleased to speak the language with you. Else, may refer you to an English-speaking associate.
I had a somewhat "unique" experience with professionals from Quebec, many years ago.
I was attending a Canada regional conference in Toronto, Ontario. We were provided with headphones (for some of the sessions) because the speakers/presenters from Quebec wouldn't speak in English. We had to listen to the simultaneous translation while the presentation was going on.
A few years later, I attended a similar conference by our US-bheadquartered professional association. The new venue was in Montreal, Quebec. All the speakers spoke in English. I asked the Quebecois host, why when they were in Toronto, they spoke in French and we needed translators? He said, "Because we are from Quebec."
And why you presented now in English? "Because you are our guests."

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And in the US we have regional accents that can be so pronounced, you DO need translators to understand each other🤣

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