5 year diagnosis anniversary!

[catbus]

I just passed my 5 years diagnosis anniversary, and I’m happy to report that my treatment has been durable and my PSA remains < 0.01.

At diagnosis, I had a PSA of 211, an alk phos above 900, multiple Mets, a Gleason of 9 (5+4), and a wonky, non-hereditary PTEN gene.

My treatment from day 1 has been:

- Abiraterone acetate / Zytiga

- Digarillix injections that changed to Orgovyx oral (had one dose of Lupron, but switched back due to lupron brain side effects)

- Avodart

- pred, vit D, calcium - to start

- vit E, sildinafil citrate, and iron - added on at various times for cause

I work out regularly, I have no cancer related pain, and my treatment side effects are all the typical ultra-low T ones.

We have stopped living like I could die any day, to planning travel and life three years out.

All things considered, life is good.

I share all this to celebrate - because we need to celebrate life’s wins, and to let all you newcomers know that there’s hope. This disease is no longer a near term death sentence.

Love each other,

Catbus

[dockam]

Wonderful my Brother💙 youtu.be/m6GZpmi8Z9Q(Not working as expected?)

Fight on 'QoL on

Randy🤙

[6357axbz]

Congrats! My 5 year coming up July 2 🤞🙏

[Kaliber]

good for you brother … we’ll ( well someone will ) be looking for your 10 clear post as well.

❤️❤️❤️

[Wife32]

wonderful!

[Carlosbach]

Exciting! Congratulations on 5+++

[Gearhead]

Congratulations! I'm about a year behind you.

BTW, do you have any metastases? I don't see that in your post or profile.

[catbus in reply to Gearhead]

Yes, multiple Mets - spine, pelvis, long bones, and one odd one on my collar bone. “Why does *that* spot hurt?!?”

Prior to diagnosis, I was training for a double-century bike ride on too small of a bike, so I thought all my bone pain was related to that.

[Ian99]

Well put. An uplifting message to read. Continued good luck to you.

[larry_dammit]

great plan, watch that Avadart, it will show a false PSA reading. Keep up the great effort there warrior 🙏🙏

[Warriorthree]

That’s great news I’m three years in this November and on ADT and my PSA is still 0.02 life is good Brother

[Chrisbaird]

Well done Catbus. Zytiga ( 500gm daily ) prednisone ( 5gm ) …..HT > protrap (every 3months ) has worked so far for me over last 2 years undetectable PSA

[tuta1960]

I am soooo happy for u!!

[Channelhomec]

Very uplifting post thank you

[RJAMSG]

congratulations 🙏🏻

[Benkaymel]

Thanks for this. I'm just at my one year anniversary of metastatic PCa Dx and PSA is still slowly dropping on Prostap, Xtandi plus some RT. Your post gives me hope for many more years of good QoL!

[hopeful1956]

That's fantastic! Wishing you and all others many more years.

[reichel]

Mazel tov

[fmenninger]

Awesome news….congrats catbus! Enjoy a 5 yr anniversary beer…..

Stay strong

[warrior22]

congrats !!

Psa100 and gleason8

Praying for same.

[Jerojj]

enhorabuena , genial resultado, y a disfrutar de la vida. Yo llevo 14 meses con diagnóstico similar y tratamiento también similar, ojalá pueda seguir tus pasos. un saludo

[Kark]

Such an important message...

[Yank66]

Wow’. Spreading hope this morning! Great news

[HikerWife]

Congrats! And thanks for sharing. My husband Eric's dx was similar (including PTEN, and he also has TP53 mutation), and he is also on abi+pred, plus chemo for triplet therapy. Hoping his remission is as durable as yours has been. Best of luck to you.

[joeydashoe]

Congrats!!!!!!

[OldGuysRule]

awesome dude!

[nuc1111]

great to hear-Ed

[SteveTheJ]

Excellent news! Best of luck!

[dhccpa]

Great results! I'm past 4.5 years on just Lupron, nothing else, even with multiple bones Mets from the start. No RP, no other hormone therapy, no radiation. Last PSA did increase to 1, next blood test 6/30. Still, always on my mind.

[gsun]

That's good news. I am just five years post DX as well. Still on this side of the grass!

[SocoCrew]

Congratulations! Fantastic to hear of how well it is going for you. It’s life’s victory indeed!

[Wings-of-Eagles]

catbus,

That was an most awesome post. H ere's hoping for many mnay many more years of celebrating life each day!.

I'm at 8 1/2 in remission, undetectable with Stage 4, GL 4+3=7 , with 5 bone mets. Zytiga is a wonder drug!. Keep on Posting the inspiration and as always ,keep the faith brother!

Wings aka Dan in So Cal

PS love your "handle" how did you choose it?

[catbus in reply to Wings-of-Eagles]

The catbus is a character from an animated movie “My Neighbor Totoro”. It’s a fantastic bit of anime that was my daughter’s favorite movie growing up. It’s on HBO Max, or I think rentable on most platforms.

[JRPnSD]

Great news! Similar profile - GL 9 and Stage 4 at diagnosis. Just reached 4 years and PSA is undetectable after the last test and T is normal (15 months post-ADT)...next week is the quarterly test...so fingers crossed Always a "hold your breath" moment when opening the results notice.

[catbus in reply to JRPnSD]

I hear you, brother, on opening those lab results!

[Gearhead in reply to JRPnSD]

I feel like I'm playing Russian roulette when I click open to see my results,

[Cancer2x]

Sounds good to me Brother! Congrats! And drive on!

[GoBucks]

Wonderful! Check this out if interested. clinicaltrials.gov/ct2/show...

I'm not actually in the trial but I've been off meds now for 1 year. Feeling great.

[staples1970]

Thank you for sharing the good news! Are you still being treated with that regimen five years out?

[catbus in reply to staples1970]

Yes, with the change I mentioned.

[Mikeski]

Cheers catbus! Great news 🙌

[Steve507]

👍😆 Congratulations...

[Researchshortcut]

I don’t contribute much to this board because I don’t have a lot to say.

However, your update touches a chord within me. I am in similar condition, but PSA hangs at .2 after 16 months from diagnosis. Alk. Phos were 405, now in 60s. Multiple bone Mets and a few lymph nodes. 3+4 Gleason and aggressive. Nothing on genetics side.

Lupron, docetaxel at time zero and added Nubeqa before end of last chemo so very close to triplet.

Very slow but deliberate decline from 34 PSa and above alk. phos.

Only hot flashes and muscle cramps and, of course, we all get tired. Exercise almost daily. Pickleball, light weights, and yard maintenance. Pickleball 4-5 x per week.

Point: all good now, but know a loaded gun is pointed at me 24/7. I ignore everything and pretend nothing wrong (I am 72 next week).

Your story reconcentrates my resolve to beat odds. So, thank you for bothering to post. I hope in 4 years I can lift someone’s spirits.

Very best wishes!

[catbus]

Hang in there, brother. That loaded gun feeling is there for me too, just not as acutely as it was in my first year.

We all get whatever time we get in this world, and it sounds like you're living a good life. I wish you peace and many more days.

[j-o-h-n]

You've been an amazing member for 5 years, keep that shit up........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 06/16/2023 11:42 PM DST

[worrywaffle]

I'm so happy about it! thank you for sharing this! my dad is on his year 3 journey. this post helps me with my anxiety

[Milo786]

Hi. How you doing. My husband diagnosed with pten loss as well. Im so stressed after finding this mutation. He is currently undetectable, encouraging to hear your story.