Check in - 6 years now for this advanced G9'er!

Haven't been on HW for quite a while. Thought I was in the wrong place with the new look!

Anyway, it's good to see some of you regulars keeping the place hopping. Glad you're still here and keeping hope alive! For any of you new guys, hang in there, things can get better! Different maybe, but better for sure.

This week 6 years ago I was trying to figure out why I had blood in my urine after a run on the treadmill. Didn't take too long to find mets concentrated heavily in my pubic bones and had escaped into lymph nodes, into my lungs, sternum and all the way up to bones in my shoulder. I was only 46.

I'm 52 now. I have posted about my story and treatments and a search can get you there if you're interested in the history. I'm doing very well now. My biggest issue is probably fatigue after 6 years of almost continuous treatment. Some more challenging than others. PSA popped up again in the fall of 2018 but still manageable and stable at 0.20 in January 2019. Hoping my Zytiga and some more outdoor activity with some warmer weather (it's really cold in MN right now!) will knock it back to zero again soon. I had dropped to 2 tablets of Zytiga due to side effects and just went back to 4 and am continuing with Lupron.

I'm interested in immunotherapies but haven't been steered there directly yet by my docs although we do keep it on the table and in our radar. Talked of Lutetium 177 as a future treatment but believe that jevtana will knock back my PSA again as it did in the first half of 2016. Glad that we still have many options with no real target yet to chase, just a stubborn little trace that shows up in my PSA tests that we've started doing monthly again.

Hope for the new guys, especially if you're a Gleason 9 like me: my initial target for survival was 2-3 years. It took some time and the chemo, surgeries, radiation, etc all came with promises of an extra few months. No doubt, this all slowed me down but for the most part the treatments were (are) worse than the cancer. Today, with no imminent issues I'm looking forward to more time with my family and planning into a future that I never thought would have been possible 4-6 years ago.

Happy New Year to my fellow warriors. Drink lots of water, stay active and enjoy life's great moments!

Good to hear from you. Keep it going.

That’s fantastic Gunner. Here’s to you getting back outdoors asap man. Take care.

Hello Gunner34,

Congratulations on reaching new milestones that bring new horizons, in the NEW YEAR !

Over time, we've had some common threads in our story, and I am just now beginning to step into my sixth year since "diagnosis day" ...

I'm here in the Midwest, surviving the Arctic Blast right now --- but I have gone walking outside, each day --- I believe in the importance and power of staying active --- physically, emotionally, and mentally --- at whatever level we can each achieve.

Thanks for blazing the trail for others ... keep shining the light, as other comrades follow along on the trail.

There's an old adage that says, "You don't have to look far, to find the comforting campfires of fellow travelers along the trail." Perfect adage for this website ~ comrades, friends, and brothers, one and all.

Best to you, for the NEW YEAR ahead,
CYCLONE ~ Iowa State University

Happy new year Brian. Lee says “Hi” as well.

Wow six years of treatment. It is great to see you doing so well with all of it and leading a very busy life with your family. I’ll be interested to see how the immunotherapy discussion goes. My docs are bullish at getting Provenge at the earliest time to help the subsequent therapies be more effective. Your docs haven’t gone that route. I think that shows how crazy this stuff can be and how individualized it often is.

As always, our best wishes to you and your family. Keep up the wonderful success.

Jack

Gunner34,

Good to hear from you again!. Here's to many more years of family and golf! I reached out to you several times and I got worried that I have not heard back. I'm thinking now that maybe I went to your spam folder. This post is such a relief.

Gunner,

Thanks for checking in...your story is inspirational...I’m with you on this crazy journey...

Jerry L.

Very good update gunner! Eight years now for me. Not bad for G9 stage 4.

Thanks for the update Gunner. And congrats on the numbers. Let's shoot for the GFMPH in Rochester ten years from now. It is supposed to be -54 with wind shill in Minneapolis today, so post some pics of any outdoor activities that you participate in.
Michael

Great to hear from you Bryan! Always impressed with your attitude and determination. So glad you get to enjoy your life with family. Talk to you soon.

Absolutely amazing, inspirational update. And looking forward to many more!
Gunner, it's guys like you who keep this whole show on the road - and heading in the right direction.
Thanks for sharing, and have a brilliant 2019!

Congratulations! I understand how this thread really helps folks that have recently been diagnosed G9. My husband was diagnosed G9 back in the spring of 2012 and his urologist gave him a max of 4 years .... well ... we are now almost in the spring of 2019. Other than being tired, he is doing wonderfully! Enjoy life and realize your life is not over. Get with a good PCa specialist - they will devise a program just for you .... and it is always changing as there are new discoveries out there.

Thank you for sharing your story.

I was 46 when I had surgery. Since then, it’s been a struggle at times. However, your positive story is good to read and reflect on.

Take care