A new plan (my plan)- good news for Gleason 9's

It's hard to toot my own horn when I see so many guys still struggling but I know I've been in a much darker place than I am now and I would have welcomed the news that I'm sharing here. It's time for me to join some of you who have shed the weight of hormone therapy!

Here's a little hope for some of you new guys, especially the bone met guys and Gleason 9's. My history in my signature below summarizes my path and previous posts have documented my challenges and triumphs.

II have been taking Casodex and either Firmagon or Lupron for 3 years and 3 months. My PSA has been zero since surgery and through radiation and today with no bounces or changes. So, tonight I start a process to move off of ADT. This is the plan:
I took my last dose of Casodex last night. I just received a Lupron shot on Monday. I will stay on Lupron through 2 more monthly injections. Just prior to my last Lupron, I'll start Casodex again to try to avoid a T spike from stopping Lupron. I'll stay on Casodex for about 3 months after stopping Lupron. And if all is good with my labs over the next 5-6 months, I'll be off all hormone therapy.

This is hard to believe. Im pretty sure my doctors as well as my wife and I never thought we'd get here. I'm excited about it but also a bit scared. I am hoping that with rising T, I'll also get my RBC back and hopefully more energy, among other things (maybe eyebrows will grow back, body hair will return?, no more hot flashes!!....)
I'll continue with monthly labs during this wind down period and I'm sure for a while afterward.

So I'm gonna get some new sunglasses. Because my future looks bright.

Brian
What a trip! I'm so happy for you and pray that you're over the hump.
Bob

I am so, so happy for you. I pray that you and Todd both are never bothered by those nasty mets ever again!
Keep sharing your story, it gives the new G 9 guys so much hope and will to stay positive and work hard to get through the tx, no matter how hard it gets at times.
Congratulations!!! And here's to new shades and as much hair as those ZZTOP boys have (ok, they're old men...but they still have a lot of dang hair. They remind me of "it" dolls, and I know someone will know what I'm referring to).
Beth

just another inspirational story... To you and all others, please never be hesitant to share your good news, no matter what is happening with me, where I am in treatment, i NEED to hear those stories of triumph and hope. All of us high risk guys have gone through the peaks and valleys...we know what the road is like and what you have gone through, and we feel nothing but happiness and love for you and your success.

Prayers that you never have to go back to the HT...that this is a nice permanent vacation. Congrats to you!!! And some hair would be nice...but I'm liking not having to worry about hair in certain places!

Congrats and best wishes for continues happy news!! Please keep sharing.
Jordan

Congratulations, Gunner! That's awesome! You have a powerful story to share, and I hope others can look to you and your path for inspiration.

It's great to see the light at the end of the long dark HT tunnel. Here's to forever low PSAs, with rising T and vanishing side effects.

The timing of T recovery is unknowable, but I'm happy to be off of all of it. I consider myself "post treatment" now, but in reality that's a long gray dawn stretching away into the distance. Until T recovers, we're de facto still "on" HT to some degree, since its effect is T suppression.

[Edit: That's interesting. I've never heard of a testosterone spike when stopping Lupron. The boys are so conked out after 3 years that it's hard to imagine them suddenly becoming all enthusiastic and cranking up production. Do you have any links about that? I'm right there, right now. Just stopped Casodex, and my last 4 month Lupron's timing out in a week.]

Outstanding news, son (though joke is wasted since Neil never logs on).

I did not realize that without Casodex there could be a T Spike after stopping Lupron too.

I have been off the Lupron and Zytiga since end of April. so almost 11 months and T finally rose beyond undetectable to 40.

With you being so much younger, hope your T and libido recover more rapidly without increasing PSA.

Fantastic news!
enjoy....

Dear Gunner34,

You've always been a supportive brother of mine on the board, over time.

Thanks for sharing your new medical steps with all of us here --- I sure want to wish you the best --- you have every bit of my support and loyalty in your treatment path.

Thought of you this week --- traveled up in Minnesota, for a follow-up visit to Mayo Clinic in Rochester --- a common thread for both of us in our treatment plan.

Want to wish you all the best, Gunner --- stay strong in the battle --- may your courage continue to be undaunted !

Sent with my best to you,
"Iowa State CYCLONE Fan"

Gunner:

Awesome! I smiled all day when I read this on my phone yesterday ... Wife and I will break open a good bottle of red and toast you tonight!

Ray

Thanks Ray,
I toasted a nice bottle last night too😉.

Fairwind -
Yes, had an open RP on 1/21/14. Before that, yes bone mets in pubic rami, ischium, sternum, lungs, shoulder++....but these were resolved before surgery due to Firmagon, Casodex, Taxotere, Etoposide & Cisplatin (neuroendocrine characteristics).
Radiation received 36 treatments June - August 2014. Other than the anomaly the other day, PSA has been less than 0.10 or 0.05 since surgery.
I was prescribed Xtandi just before my surgery since my PSA was going down but the lowest it got was 0.18, then it went to 0.36 in one month which was immediately after all the chemo and immediately before surgery. I think my doctor explained this as hormone refractory (I think their notes help in coding for insurance purposes). Was on Xtandi until August 2014 and quit it due to side effects. Been on Casodex & Lupron since.