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Hormone Therapy

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  1. I’ve been on hormone therapy for a year. It was successful in decreasing my PSA to undetectable. I previously had my prostrate removed in 2001 but a growth reappeared several years ago. The therapy has totally decreased the growth.
    I can put up with the hot flashes, constipation and some minor aches. The weight gain has been minimal, only 5pounds but I am careful with what I eat and drink.
    What I can’t put up with is what has happened to my nasal passages. I have been to an ENT doc and he scoped for polyps. NOTHING. I then went to an allergist and was tested. NOTHING. Most days I can not breathe through my nose without having a nasal strip. On some days my nose runs so bad I end up plowing my nose so much that the area below my nose becomes raw.
    So far no one has been able to help.
    If anyone has a similar experience and solution please let me know. As I said this is the worse side effect I’ve had and it’s horrible.

    1. Hi jimmyc. Sorry to hear you have been having these sinus issues. I haven't been able to find this listed or discussed as a side effect or hormone therapy, but that, of course, does not mean it isn't an issue. You can ask your doctor to report it as a potential side effect to the FDA or you can do it yourself. Here is the FDA Web site on reporting side effects: https://www.fda.gov/safety/medwatch/howtoreport/ucm053074.htm. Hoping you get some answers and relief soon. Best, Richard (ProstateCancer)

  2. I received a split treatment plan of 23 IMRT's followed by 16 Proton Boosts. Finishing last Dec. at the Jacksonville FL, UF Shands Proton Therapy Center. This was after following a typical guy's education process who ends up at a Proton Treatment Center. Most doctors would not discuss Proton Therapy, it was surgery only. Or combination of IMRT's and seeds. I received my first Lupron shot early last July to put everything on hold until I could start my treatments. The plan was for 18 total months. I have since received 2 more shots at 3 month intervals. My next shot is scheduled for mid March with 2 left after that. I have been very lucky. The hot flashes are not fun, especially when they seem to come in waves. I work outside so last summer was a learning experience. I will see how this summer goes. Other side effects I can live with until the shots are over with. Then we will deal with them. BUT I would now follow the exact same treatment plan again. I found my elevated PSA on a random blood test Jan '18.. As a reference point. Jan '18 PSA 4.1, April '18 PSA 6+, Early July PSA 8+. After treatment and 2 hormone shots of Lupron Dec. PSA 0.10. We (my fantastic wife and I) will see where it goes and deal with it. Sorry for the length.

    1. As a general response to concerns about ADT side effects, I offer these comments. Maybe it will make someone's quality of life just a little better, given the truly difficult realities of ADT.

      Nine years ago when I first was put on Lupron and radiation treatments I was determined to be the guy that could handle it. Not to be. After 6 months with every side effect in the book plus narcolepsy, I quit. I said I'd rather be dead than feel like I felt on Lupron, and maybe I meant it. And I did well with some additional radiation and some carefully chosen supplements. For a few years I thought I could keep the cancer at bey without Lupron. But that all changed eventually, and now here we go again.

      This time I have planned a strategy for almost every side effect. I was very active, a runner, racer, bike rider and Lupron knocked all that out before. This time I have anticipated that and have my wife and friends ready to push me to go on walks regularly (no, I don't have much initiative!), I bought an e-bike (pedal assist), and these things keep me active, unlike before.

      I was quite sexually active, but knowing that the Lupron would kill my Libido, I arranged for a source of affordable Sildenafil and scheduled regular "sessions" whether I felt like it or not. And once I get into it, I start to feel my normal sexual self again, at least for an hour or so!

      The narcolepsy has not emerged as a problem this time, but if it does I have my doctor ready to address it with medication. The hot-flashes? Still working on that one!

      These are just a few examples that are relevant for me. There are a few others. These strategies help keep me feeling somewhat like my old self, not like some other entity had invaded my body as I did before. They add pleasures that I lost completely before. They give me hope that I can continue this until such time that another approach is needed.

      1. , this post is a fantastic addition to 's comment. Your approach is unique to me in that you had a preview of these side effects and therefore a chance to analyze what you had to do differently the second time around.

        I appreciate that you're working as a team with the folks around you, wife and friends. Someone said on Facebook that they really rely on friends at the gym to enforce the exercise. And I think a lot of guys lose hope about the sexual aspect because of the lack of libido, so I appreciate your approach to ensure you and your wife still have that intimacy.

        Your practical, problem-solving strategies reminded me of Simon's article here - not the same situation, but similar mindset: https://prostatecancer.net/living/diagnosed-younger-age/.

        Thanks for posting and keep on contributing what you learn!

        – Nina, ProstateCancer.net Team
        Want to hear more from the community? Join us on the Community page: https://prostatecancer.net/community/.

      2. @Nina, thanks for your nice comments. I could have listed a few more, and I'm still refining some strategies. But some of the most important others could be grouped under the heading "passions and people" - things and folks that just make me feel good! I may need help to focus, but they are still there, and so valuable. They would vary from person to person, of course, but losing track of them is too easy. You, with the help of family and friends, need to find them and build them back into your life. Anyway, this is working for me, making me feel just a little more like my "normal" self.

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