Seven Years. Gunner34 is still kick’n, followups, and new scan activity

As I write this I am at the end of wonderful vacation with my wife in Hawaii. I am still in awe that I survived the first couple years after my diagnosis (I was told that wasn’t likely) and yet here I am. It’s been 7 years.

I fought off another cancer advance this year and will be getting scans again late next month to see where we are at. But my PSA appears to be heading in the right direction (down) and I am very hopeful that the scans will also show improvement.

I was accepted into a Lutetium trial mid year 2019 but dropped out when I found out that I was randomized into a group receiving standard of care (Erleada and Lupron). I took a short 6 week break from that standard (stayed on Lupron) to receive 25 more radiation treatments to my retro peritoneal lymph nodes in the fall.

My biggest issues today are fatigue and pain and thrush. I have many more complaints but I try to count my blessings as well and I feel very fortunate to be well enough to be around to enjoy and participate in life’s events with my incredible wife and 3 children who are still students (just one left in high school and 2 off to college).

My updates in past years are searchable and include more detail on the aggressive path of treatment that has been basically nonstop now for seven years. I have been suppressing my testosterone for almost 7 years straight. Thus the fatigue, muscle/joint/bone pain, thrush and other issues that are part of my daily battle. But I feel it’s necessary for those that haven’t seen my story yet to continue to hang it out there. I’m a Gleason 9 ( 5+4) that started oligometastatic + stage 4 with not a lot of hope. Ive had mets in prostate, lymph nodes, many bones from my legs up to my shoulders, lungs and more. But I’m still alive, battling my daily issues and attending to the long term plan of keeping PSA low and preventing prostate cancer from getting in the way of the life I want and my family needs me for! This means quarterly Lupron. Daily Erleada. I’m back to monthly labs and will change my treatment course as necessary. I work hard to stay fit, eat right and rest. Lots of rest these days, probably more rest than anything else. But I rally when I need to and play as much as I am able.

So if you’re new here and especially if you’ve got a high Gleason score and multiple Mets and a high PSA: There’s hope. I’m sorry to say your life will change. But there are incredible treatment options for you. There are so many incredible physicians if you take time to find them. And Healingwell can help if you need to find others like you and you need to see success stories from people who have already experienced what you’re about to go through. You can do it. Believe it. And then do it.

I’m still tracking many of you HW veterans. I am glad to see so many of you doing well. Some of you were the original inspiration for me, the success story I needed to see in order to face chemo, surgery, no testosterone, radiation... Take care guys and keep the faith!

Gunner

Seven years! That is great... Keep it going and it sounds like you are active and on top of this beast!

pasayten

Gunner, what a great success story, and a terrific message that will no doubt help guys here just starting a similar path to yours. Keep up the fight and thanks for sticking around here and helping others

Congratulations Gunner, so glad to hear you are continuing and finding degrees of success. You've been a fighter, for sure.

When I first arrived here almost 7 years ago you were one of the first to reach out to me and I really appreciated your thoughts. Your approach, your "never give up" mindset, has been inspirational. We had an amazing group on this forum at the time, and to this day I cherish my GFMPH friends!

All the best, good sir.

Great to hear an update. Wishing you a great 2020!

It is always a genuine pleasure to come here to the forum on any given day and read such an inspirational post such as yours, Gunner34!

It brings to mind a thought of how such a fine account as yours might be made even more useful.

As you have probably noticed, at the top of the forum index screen we have as of now two permanent threads ("Newly diagnosed..." and "Long running threads..."). They were topics considered important enough to get their own permanent, top-of-the-list status.

Well, maybe we should start to think about adding a third one, call it simply "Success Stories" or such, with links in it to the positive and exciting posts like yours that are often posted here, telling us the good news of how keeping this beast down can be done and done well, even when the odds of doing so are discouraging. What such stories could do to inspire others who come here and read them, especially the newbies!

Just a thought. But in any case thank you so very much for posting your inspirational story, and best wishes for continued positive developments in your health!

Keep up the fight Gunner! You are an inspiration to all!

Thanks Gunner from a new guy who agrees with 81GyGuy—positive messages like yours would be well-homed in a sticky. I think scared newbies like me and old friends alike would find cheer and solace.

Anyway, thanks again and keep it up!!

Awesome news buddy.. Always great to get these reports of enjoying life big time and even better keeping the Monster away. I am so pleased for you guys. Hope to see you guys in Sept. in Rochester.

Here’s another update:

MRI last week showed improvement as involved lymph nodes are shrinking. Radiation that I received in September & October of 2019 appears to be doing its job. I’m hoping it will continue. PSA is down but insignificantly. In my book, down is good since no change or increases cause anxiety. My PSA has always been uncharacteristically low. Even in 2013 when I had my entire pubic bone full of cancer and multiple other metastatic areas (and of course a raging prostate) my PSA was less than 13.0.

On another note, I have been having a harder time dealing with the MRI’s. I request a large bore MRI because I am not a small man but it’s still a pretty tight fit. This latest procedure was 90 minutes. These tests didn’t seem to bother me the first 5 years or so but the last few scans have been completed with high anxiety. I actually told the technicians I couldn’t do it last week. They pulled me back out and talked with me. My wife sent me a message through the nurses that my PSA went down and I think that helped settle me down. Another thing that helps me get through it is I put my arms above my head. They don’t seem to like that when I’m getting contrast but it’s about the only way I can stand being in close quarters like that.

I used to get very relaxed during my scans. In fact, I would get so relaxed they would have to tell me to breathe. I would imagine myself playing on a golf course or walking on a beach and just go to my happy place. I think I have lost my focus a little bit in the last couple of years. I have done so many scans that I seem to go into autopilot but unfortunately lately I’ve become more anxious. I suppose that I keep thinking that I’ve had a good run and my luck could be running out.

Overall, I think that my news is excellent and I’m happy that I can continue with some significant travel plans that I have already booked for this year. I’m happy to share this with anyone who needs to know or wants to headroom that things can get better after recurrences.

As I’ve said many times here, I feel that I shouldn’t complain about minor issues when I see many guys who are struggling with more severe issues. But, it’s part of the journey and I guess a little vent now and then to mark time can be healthy too.

My best to my fellow warriors,

Gunner

Great News Gunner!
Your post are a inspiration to me and I am in AS protocol. Thanks for keeping us up to date with the progress. I am so happy you were able to enjoy Hawaii!

Keep on livin!

Larry

Thanks for the update. Good luck ahead!

Congrats, you give all of us hope, thanks.

MP