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Post-treatment update
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.
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I wrapped up 6 months on Orgovyx two months ago and 28 sessions of EBRT about 5-1/2 months ago. Had blood work done about 5 weeks ago - PSA was at 0.08, T had come up to 35, from 7 in October of last year.
Radiation side effects are pretty much gone. ADT side effects have lingered a bit, but hot flashes are becoming rare and the sexual side effects seem to be dissipating - I can perform, with help from a small dose of Viagra, and actually have an interest in sex again.
Hope things continue to improve for you, too. Hang in there!
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3 ReactionsI am so happy to hear that. I hope that things keep improving for you, and don't forget about us here when you're back living a cancer-free life.
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4 ReactionsScott, your improvement is epic! Just a few short months ago you were nowhere near this current level of positivity and sexual ability. Time is a great healer and hopefully you will continue to improve.
Even if you don’t attain your previous level of T and sexual prowess, beating prostate cancer is a HUGE checkmark in the plus column - never forget THAT PART!!!
Phil
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6 ReactionsYeah, that last part hits me from time to time but the feeling is different. It used to be fear, dread, anger and sadness as in "holy sh*t I have cancer" and now it's more of a feeling of awe sometimes: "holy sh*t I made it through cancer treatment"
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3 ReactionsI'll still be around, at least on the insomnia forum until I can start getting a good night's sleep 😃. P.S. decided to vacation in Canada for -- well, we can't talk politics here -- so let's just say "reasons." What's a good place in Eastern Canada to visit for some solitude and nature but still enough civilization to have restaurants and hotels?
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2 ReactionsIf you want a city as your home base, Quebec City, hands down. The old city is like visiting Europe, the Faubourg St-Jean just outside the old city walls is a great area for nightlife (including some long-established gay venues), and it's very quick and easy to get outside the city to the Laurentian Mountains, Montmorency Falls, Île d'Orléans, etc. (you could easily spend a day or more cycling or hiking around the island). It's also just a 2-hour train ride to Montréal for when you want to take the culture and nightlife up a couple of notches.
If you want mostly nature rather than a city with nature access, you could try south of Quebec City in the Eastern Townships. It's beautiful camping and hiking country around Sherbrooke.
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2 ReactionsI’ll second that, North. I was amazed at the long history - over 400 years - of this incredible city. For my money, why go to Europe with all the hassle of overseas air travel when it’s just up the border from the NY area? The food, the people, the countryside…Great suggestion.
Phil
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1 ReactionGlad 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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1 ReactionI 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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1 ReactionWe were there for the 400 yr anniversary just as a bizarre weather front settled over the lake and region. It rained continuously - teeming at times with such intensity that traffic had to halt!
It did put a damper 🫣 on things but never stopped us from venturing out into the Old City.
The locals told us that it had been raining for three MONTHS and no one could ever remember such a bizarre weather event. Many street events had to be cancelled.
We definitely plan to return and hopefully the sun will shine a bit more🌞
Hope you are feeling better today.
Phil
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