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10 years and still going G9 Stage 4

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Posted 10/30/2022 4:32 PM (GMT 0)
Just wanted to check in and celebrate a little bit with friends. It's been a little over 10 years since I was diagnosed, and everyday is a bonus day.

I've been so thankful throughout this journey for you all and for friends who went before us. One of the first times I felt hope was finding this group.

The suggestions and stories here have informed my decisions at every major step in the journey. You've encouraged me to learn about upcoming treatments, seek out second and third opinions, and push doctors to look beyond the "standard of care". I always tell them that I want the "excellent care" instead.

It hasn't been easy for me and my body and brain suffer from long term lack of T, but I'm still here and looking forward to tomorrow.

Right now my PSA is at 57 which is a small miracle given that it can double every 5 weeks when unchecked--and lupron or zytiga don't slow it down anymore. Now after a long wait I'm scheduled for my first round of Pluvicto in a couple of days, so the journey continues.

Hang in there and push for excellent care.

Ray

PS special mentions to Zufus, Sonny3, Gunner34, 142, goodlife, Nomar, and other brothers who have kept the faith and are gone before their time. They are missed.
Posted 10/30/2022 5:09 PM (GMT 0)
Steelguy,
I imagine that sooner or later I will be trying Pluvicto too. A lot of guys have high hopes for this treatment.

Good luck!
Posted 10/30/2022 6:30 PM (GMT 0)
Best wishes for good results with the Pluvicto. Lupron and Zytiga are still working for me, but like some others here I expect to see Pluvicto further down this road.
Jim
Posted 10/30/2022 6:44 PM (GMT 0)
Hello, SteelGuy ~

That's exactly what I was looking for when I first found this website, too ~ stories of survivorship that were measured in years, not months.

In those early days ~ following my diagnosis in 2013 ~ my doctor wasn't smiling.

The news from my diagnostic scans was sobering ... and I remember sleepless nights and constant worry and fears and anxiety.

I think we have all stood at that "spot in the road" ~ quite unsure how much farther one can "kick the can" down that road we have all traveled upon.

Your story brings forth the hope that I was looking for then ... the story of a fellow who has celebrated a few more birthdays & set up a few more Christmas trees & turned a few more calendar pages to January on New Year's Day & seen a few more Super Bowls & lit up a few more birthday candles on his birthday cake ~ with family and friends.

I look for every sunrise & give quiet thanks for every sunset I have witnessed since I was diagnosed.

I'm getting closer & closer to that ten-year milestone, and am thankful to row in the wake behind those who first offered me a spot in the lifeboat & tossed me a lifeline when I discovered this website.

The name painted on that lifeboat, you ask? "H-O-P-E!"

Keep rowing, and here's to those fellows who are just discovering this website today!

Keep ROWING, fellas!

With my best to you ~
CYCLONE ~ # Iowa State University
Posted 10/30/2022 7:56 PM (GMT 0)
Good to hear from you SteelGuy, and you have had a good run. Hopefully Pluvicto will give you an even better run. Keep us posted as you are able to on your treatment.
Michael
Posted 10/30/2022 8:28 PM (GMT 0)
SteelGuy,
Congratulations on your ten year anniversary! I'm coming up on my one year anniversary and when I see success stories such as yours, it gives me more power to press on and meet the same milestones you have reached over the past ten years.

Press on brother and thank you.

Ron
Posted 10/30/2022 9:33 PM (GMT 0)
Thank you for the uplifting story.
I'm blessed to have found this site and the awesome people here.
Fear, worry and lack of knowledge had me scared. Soon after posting my story, I had answers and most importantly, hope.
Good on you!

Glen
Posted 10/31/2022 4:15 AM (GMT 0)
Congrats on 10-I'm only 5 behind. Best of luck on your next treatment. Hoping we hear great news soon.
Posted 10/31/2022 4:38 PM (GMT 0)
Congratulations Brother!!!!!
May God Bless you and yours!
Posted 11/30/2022 4:33 AM (GMT 0)
Hey Steelguy - so good to hear from you. Your advice was helpful to me early on, and I'm not far behind you (10 years for me in April 2023).

You've been fighting a long fight! All the best to you, my brother.
Posted 12/1/2022 6:33 PM (GMT 0)
Steelguy. Wish you all success with LU-177. And thanks for remembering some of the men who have gone before.
Posted 12/14/2022 12:53 AM (GMT 0)
SteelGuy......I am motivated to hear your success story being a G9 myself.....10 years is outstanding results and I wish you many more brother. Survivor stories help all of us so keep them coming.
Posted 12/17/2022 8:40 AM (GMT 0)
Hi Ray, great to hear from you.

Thanks for the update. We met several years ago at Sonny’s GFMPH in Florida, I think spring 2014. You came in for the Saturday meeting and I had to leave that evening. You were pretty new at the time and as I remember a pretty good start controlling the disease. I have appreciated your updates and positive approach to life and it’s challenges. I wish you the best with the new drugs, hopefully it gets you back into a good remission.

Jack
Posted 12/19/2022 3:19 AM (GMT 0)

DownSyndrome123 said...
Brand new to this still overwhelmed and trying I figure it all,out. I don’t know much but learning quick. Cannot get all the labels , names. Etc but hubby 79 very active in construction trades. ..pretty good health before all this . Gleason 9 biopsy showed 85-90% in 10 voresc7 in others pet scan show local , lower stomach and distant lymph nodes near thoracic area….they started a week pills of bilutamide and then I think elagard and another they are mulling over. After that 9 weeks of radiation …describing all these side effects from the ADT. And now today radiologist describes what that could do to him? I’m scared confused overwhelmed and wondering how hard this was for all,of you during your fighting years ?

DS Welcome to the forum, sorry you and your husband are dealing with this. I’ve moved your post into its own thread, which will increase your chance of getting responses. Click here to go to that thread..l.

https://www.healingwell.com/community/default.aspx?f=35&m=4309980&p=1
Posted 12/19/2022 5:34 AM (GMT 0)

DownSyndrome123 said...
Brand new to this still overwhelmed and trying I figure it all,out. I don’t know much but learning quick. Cannot get all the labels , names. Etc but hubby 79 very active in construction trades. ..pretty good health before all this . Gleason 9 biopsy showed 85-90% in 10 voresc7 in others pet scan show local , lower stomach and distant lymph nodes near thoracic area….they started a week pills of bilutamide and then I think elagard and another they are mulling over. After that 9 weeks of radiation …describing all these side effects from the ADT. And now today radiologist describes what that could do to him? I’m scared confused overwhelmed and wondering how hard this was for all,of you during your fighting years ?

The side effects suck. No testosterone will dissolve his muscle and bone mass.. Your man has to either dedicate himself to physical fitness. Both cardio and weight training. A personal trainer 2-3 days a week is a good option, vitamin D and calcium will protest his skeleton,

Hot flashes are treatable with oral meds or estradiol patches. Energy loss and brain fog are not so easily treated. Be prepared for mood swings and depressi9n.
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