Hi everyone. 9+ years on (take a peek at my bio.) Stage IV pca. I'm still hormone sensitive with undetectable PSA. Living life and enjoying my time with friends and family.
In November I will enter year 2 of multiple myeloma DX. Have been through induction but not needing a stem cell transplant yet. Latest scan showed no signs of progression.
I've moved to 1 scan every year for PCA (assuming no change in PSA level.) Still having FDG scans every few months for MM.
For anyone who is just hearing those awful words from their physician, you aren't alone. This forum is a great source of information and support.
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swwags
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congratulations, good for you brother. I want to hang in there like you have. Ima at 6 years this October ( providing I make October ) and I’d. Like to make it 16 lol. I’ve got a couplea cancers , now, too but 2nd one minor by comparison.
Longevity posts like yours ( even mine to a lesser degree ) can be uplifting ….. especially to the newer arrivals that worry a lot. It’s uplifting , positive news / posts that helps balance out all the inevitable negative ambiance that goes with a aPCa group of any kind. Thanks for posting, keep it going brother.
lol ….in 16 years , I’d be 94 ….that seems like a lot. I’ll be lucky to be able to tolerate 16 more weeks of this. You could push my wheeled chair that cancer / adt has put me in. Rotflol. Thank you brother lettuce . Turns out that when you “ beat them / it “ for sufficiently long, the shiny kinda wears off ….. then it can be fairly ugly at times. lol. Any day smelling the daisies is ever so much better than pushing them up. lol
I’m at 19 years since dx. Still HSMPC and on BAT going on 3 years with undetectable PSA. Was in a wheelchair until two months ago for a terrible leg infection and now learning to run again. Though my PT tells me I suck. I will show him though don’t expect me in the Paralympic’s in LA. Have a very kool wheelchair for sale. Kaliber is my inspiration. MB
You are setting the mark to aspire to…plus you got outta the wheelchair. Double bonus buddy. I’d be smiling at 19 years ….possibly. Not smiling very much here at nearly 6 years
. Lol. getting out of my wheelchair won’t be in my possibilities tho. I have a walker cue’d up in my Amazon shopping cart … I hate thinking of those walkers. Both my knees buckling now ( used to be only one ) I’m gonna face plant or break one or both knees all to pieces with the met chewed up bone in those.
You sound like you are uptempo ing rather than degenerating, at three years that’d be impressive, at 19 years, ….wow. lol. I wanna some of whatever you are having lol.
Thanks Kaliber. You are actually my inspiration. Went from the wheelchair to a walker to quad cane then left it behind. Learned to walk again and now how to run (slowly and awkwardly). What am I on? Determination, stubbornness, anger and quite a bit of testosterone on BAT. LOVE and support to you man. MB
That Lupron 6 month implant ( last Wednesday) kicked my hiney pretty good this time. Pretty much gone now , thank goodness.
Ima hoping the walker ( still a few days out ) can help restore some of the little used lower body muscles, plus …. if I can walk some with it . Determination is a good word brother , the whole thing you said. Heck no I won’t go …. lol …. The endless string of obstacles that keep popping up …. They are meeting the endless string of Kaliber’s “ work-a-rounds “ that will kick them to the curb …..right lol. The hammer asked me if I was OK this morning , didn’t want to use the phrase “ scary looking “ ….. I’m actually pretty good today , sometimes I wake up a bit rough but I clean up easy .😂😂😂 ( actually felt better today than mostly lately and Im writing this in the jacuzzi , tiny chameleons rustling in the hammer’s banana tree jungle , different birds enjoying the warm puddles left by my sprinklers, eating my remaining grapes and raisins on the vine ) ….
The weather will start breaking and dropping below 100f + ….any day now and I’m going to wear the tires off the etrike. lol. I’ve got 6 great shopping centers nearby with plenty of sidewalk restaurants ( my etrike is pretty big indoors ) with-in etriking distance.. plus two city - county hike and bike trails that are very well kept ( in this part of town, at least ) .
Today I feel strongly upbeat for a change, plus your positive posting really reenforces the upbeat ambiance too my brother. Love you back ❤️❤️❤️ my brother …
Happy to hear that you are feeling better today, Kaliber. The beautiful description of the view and life from your jacuzzi sounds amazing. I should come and visit you in person (IRL) if that is possible for you and the Hammer. I could stay in a nearby hotel and visit for talk and outings together. What do you think?
Even though the e-trike gives you so much access, you still need to walk with the walker or whatever is required to build and protect the lower body and core. A good PT can push you and show what needs to be addressed next. I have a very good one here twice weekly. And daily two sessions when I was in the rehab hospital. It can be challenging and yet very satisfying to see the progress. What I can do this week that I could not do last week.
I can send you a PM with my direct contact info if you like. MB / Paul
Good for you!! Hubby is 8 years in but not without going through all the SOC treatments plus pluvicto. He’s on chemo again (third time) but still here. 64 when biopsied - Gleason 7. Will be 72 in January
Kaliber, you are one of the most uplifting and positive people I’ve had the pleasure to witness. Your attitude is my inspiration. You’re a gift to this forum and I thank you.
Thanks for saying so buddy …. lol. I had another 6 month Lupron depot yesterday, I like the idea of 6 months, but they make me sick for 2-3 days after I get them. Didn’t happen with the 3 or 1 month doses. Plus the gesture getting a 6 month….. like I might have 6 months of expectations ahead , is always kinda positive ( power of suggestion lol ). Love ya big guy , ❤️❤️❤️.
I want to pile on here too and say what good sprits you bring to the forum and how you are an inspiration to me how you have been enduring SO much in your treatments and still maintaining a great attitude! You are one of the people who were around when I first joined HU, and I feel like you are part of my "class" of people familiar from those times. Although many of them have faded away, like greatjohn and Cleodman , a lot of new blood shows up and you're one of the people who always jumps in and welcomes them and gives them inspiration.
Thanks for all those flowers my brother, I really appreciate them / you saying so. We all know how the newly DX’d guys feel , don’t we. the angst, anexiety, freaked out depression, the hurt …… family pain. Cripes it’d freak anyone out ( all of us for sure. ). If I can , I like to say hello and welcome another poor brother into the group. I think the medical knowledge that is available here , plus all the guys and gals with warm understanding hearts found here …. I think this guy is lucky to have found us , I like to make them feel like they have found a welcoming home for their duration. They are among brothers that understand completely and can help them when they feel a need or just talk to them / let them rant ( if that’s what they need to feel better ). We’ll all come and go, but I hope the spirit remains …. especially with guys like you to move ahead with the group.
Amazing news… congratulations from someone newly diagnosed 2 months ago (PSA 530 - Gleason 7(4-3)). It’s inspiring to see guys like you increasing those batting averages! More power to your elbow!
Congratulations, Bro. I've just completed 5 years, Stage 4 Gleason 9. Just did an aortic valve replacement op 3 months ago, due to severe stenosis. One day at a time. Cheers.
Thanks for sharing. I'm about 6 months in to my diagnoses. Gleason 9. PSA 466. PSA is now down to undetectabe via Zytiga and Abiraterone. Had to skip the chemo. I appreciate you sharing your story of longevity, health and battle! I look forward to many years, as well!
I just entered year 8 with stage 4 advanced prostate cancer. PSA#'s have always been single digit but had radical surgery, (because it was highly likely to have spread based on biopsy's and doubling times). Since then, two bouts of radiation (66 sessions, total). Last PSMA scan a year ago showed mets in the abdominal area but after latest radiation and Orgovyx, Zytiga and Prednisone for a year, my most recent PSA# was 0.09. Hoping to get to non-detectable. Blood work tomorrow will tell. Good luck to all.
Yes, thank you! The mets were targetable during my most recent radiation treatments. I describe the treatments as half shotgun and half sniper for the six mets. The treatments were helpful as my last two PSA numbers were 0.09 three months ago and 0.05 last Friday. The numbers are both good, and both small, but the % difference is large, which is the good news. Hopefully we will reach "non-detectable" someday soon and I can stop taking my meds, Orgovyx, Zitega and Prednizone. I don't care for the side effects!! Thank you for the positive thoughts. Best to you.
You are at the point where I was after SBRT to mets I went to Genesis Care in Perth Aus. For Lutetium 177 with antibody ligand, Lu-PSMA-J591 (not Pluvicto) to mop up any micro mets. I was also on my BAT regimen. My PSA dropped by 90% and then became undetectable, where it has been for over two years now.
I'm over 11 years out from a Gleason 9 5+4, stage 3 diagnosis. Radiation and ADT primary, then back on permanent ADT after it was recurring a few years later. My PSA has been undetectable ever since I restarted ADT.
Modern therapies are quite effective. Many men, even with pretty advanced cases, do very well for a long time. There is definitely hope!
Going on 7 years now with lots of stories of how God was involved in this. Feeling super blessed to still be here to watch grandkids grow up and spend time with family. Anyone newly diagnosed don’t let the fear in because there’s hope.🙏
Thanks for the banana jungle and chameleon photos. “Hey Mr Tallyman, tally me bananas. Daylight come and me wants to go home.” Ain’t it the truth with our situations.
lol …. The bananas on trees this high from the equator are rather small at about 2” … but they do come in bunches and hummingbirds love the nectar from banana flowers.
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Yet another fork in the road
Merry Chemo Christmas!!
What next?
At what psa is PCa suspected?
Bummed, PSA went up 0.08 in a Week! Am I failing ADT?
