5-years Today ... and counting! :) - Advanced Prostate...

Advanced Prostate Cancer

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5-years Today ... and counting! :)

JamesAtlanta profile image
65 Replies

Today is my 5th anniversary since being diagnosed with advanced PCa. Currently 4-months into an ADT holiday. No PSA detectable for 29-months!

Seems like just yesterday I heard those words, “you’ve got cancer.”

Starting with a 227 PSA and 1 met in my spine, I’ve had radiation to the spine, 6 rounds of chemo, 4 1/2 years of ADT, a prostatectomy, and implanted a pacemaker.

Worth every bit of it! Amazing what they can do to treat PCa these days. I’m incredibly fortunate. I hope my experience gives hope to others. Keep fighting. You can beat this thing!

Best wishes to all! And thanks to all the members here who have given me invaluable advice to help me get to this point!

James

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JamesAtlanta profile image
JamesAtlanta
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65 Replies
Shooter1 profile image
Shooter1

Wow...……..somebody who has gone through more than me, but I'm only 2 1/2 years into this mess..

Chiquis profile image
Chiquis

🙏👏

timotur profile image
timotur

That's awesome James-- from 227 to 0 and holding after five years. Congrats! Enjoy the ADT vacation.

Haniff profile image
Haniff

Well Done JamesAtlanta 👏👏👏

Keep at it and keep the beast down in the dungeon brother

❤️

Haniff

Gearhead profile image
Gearhead

James, thanks for your post and happy 5th! You are indeed an inspiration for many of us.

TNCanuck profile image
TNCanuck

Way to go, James! You've attacked the beast and you are winning! Wishing you 5 x 5 more years!

Congrats James ! Five years is a mile marker . I also reached it two months ago myself ..Gratitude is key .. Enjoy and ride the good tide.. good luck on vacation . May your T return .. 🥳🕺

JamesAtlanta profile image
JamesAtlanta in reply to

Congratulations on your 5-year anniversary, too! Well done!

in reply toJamesAtlanta

We are lucky!🙏

greatjohn profile image
greatjohn

Wow. Great to hear! So happy for you.

gJohn

vforvendetta profile image
vforvendetta

Keep up the good work :-)

It so good to read your update. Keep them coming!🙏

Take good care and stay safe

Nicnatno profile image
Nicnatno

Hey James, here's to another 5 and another 5 and so on.

Nick

Garbonzeaux profile image
Garbonzeaux

Wonderful James!

Who's your Dr. at MDA?

JamesAtlanta profile image
JamesAtlanta in reply toGarbonzeaux

My oncologist at MD Anderson is Dr. Eleni Efstathiou. She’s excellent.

Magnus1964 profile image
Magnus1964

Live long and prosper.

tallguy2 profile image
tallguy2

You are doing great! My advice is to watch the PSA carefully now. And if it starts rising do NOT allow the doctor to wait until it hits 2.0 or 4.0 before requesting a CT scan or PET/Axumin scan. If the trajectory moves rapidly then you must move rapidly to re-introduce ADT, too (that's what I did).

Best wishes!

JamesAtlanta profile image
JamesAtlanta in reply totallguy2

Thanks for the advice. I’m being tested every 8-weeks, so watching very closely. I’m make sure to insist on scans quickly, if needed. (Hope not ;)

Best wishes on your journey!

James

VioS profile image
VioS

Great news and so happy to hear some positive outcomes in this fight!

RonnyBaby profile image
RonnyBaby

It's great to hear about the survivors - an inspiration and hope for others ....

estoud profile image
estoud

Great news! I hope I can reach five years undetectable PSA.

JamesAtlanta profile image
JamesAtlanta in reply toestoud

You can do it!

Tmetz profile image
Tmetz

Congratulations James!

Fitzbruce1 profile image
Fitzbruce1

Congrats on the Big 5! Stories like yours give so many of us that non tangible thing called HOPE!

Absolutely love hearing about your great milestone. Your journey does give "youngsters" like me, who is at my 2 year mark, a lot of hope and inspires us to continue the fight. All the best to you.

Newyork6264 profile image
Newyork6264

Fantastic. Stories like your give us all hope.

TonyS58 profile image
TonyS58

That's great news, but I would proceed with caution. My T started approaching normal at 6 months into my ADT holiday and at 9 months, my PSA was off to the races with mets in the sacrum and 4 vertebrae. Like tallguy2 said, if there's any movement of the psa needle, act quickly and get back on the ADT.

JamesAtlanta profile image
JamesAtlanta in reply toTonyS58

Thanks. Appreciate your advice. Certainly watching it carefully, with labs every 8-weeks. But your word of caution is very helpful to know.

Have a great day!

James

No17 profile image
No17

Great to hear! You made my day!

All the best down the road!

leo2634 profile image
leo2634

That's great news James. In looking forward to your 10 year post so that all of us Brothers will have survived 5 more years along with you. Leo

Curehunter profile image
Curehunter

Great news James and wish you many more years. I'm in my 3th month journey so this is inspirational for me.

JamesAtlanta profile image
JamesAtlanta in reply toCurehunter

I remember 3-months in. My head was still spinning. I would read things on the internet (had not found this forum yet)...I had NO IDEA what anyone was talking about. Quite a lot to learn. It can be overwhelming. But you can do it! Just one step at a time! :)

And the help here from fellow brothers and caregivers is incredible!

Best wishes on your journey!

James

Istomin profile image
Istomin

Great news!

Mikeski profile image
Mikeski

Great milestone. Now on to the next 5!

Wdoug profile image
Wdoug

Wonderful results! Enjoy life!

Congrats!!!!!

Horse12888 profile image
Horse12888

Very happy for you. Four months (after ADT) is about the time I started to feel better. Have you noticed any abatement of the SEs?

JamesAtlanta profile image
JamesAtlanta in reply toHorse12888

Finally starting to feel a little better... It’s been 4-months. So you pegged the right timing! Hope to start being able to build back lost muscle mass soon. But walks and riding my Peloton has started to get easier.

Thanks for the nice note!

James

Boywonder56 profile image
Boywonder56 in reply toJamesAtlanta

Just wondering how your doing if still on vac.....i asked they wont let me...ductal.....

JamesAtlanta profile image
JamesAtlanta in reply toBoywonder56

Thanks for asking. Still undetectable after 9-months. Fingers crossed!

Hope you are doing great!

James

Jscjac profile image
Jscjac

So very happy for you ! You are always a great source of encouragement and support. It’s wonderful to hear your good news ! Carry on ! ❤️

So happy for you and your family!!!!

Blueslover profile image
Blueslover

At what point and why did your Drs decide to start chemotherapy? I'm 3 years into ADT and about to become castrate resistant and can't understand why this has not been advised for me?

JamesAtlanta profile image
JamesAtlanta in reply toBlueslover

I had chemo about 8-weeks after diagnosis. Studies had just come out recommending early chemo. So we took that aggressive approach. Since then, though, they encourage either early chemo or Zytiga along with ADT to be started early. This change happened after I had chemo.

I went from 227 PSA to undetectable over a period of a few months. After about a year, though, my PSA started rising about 0.1 / month. When it reached 1.8, my MO prescribed Zytiga. This took my PSA back to Zero for 2-years. After my prostatectomy (no sign of active cancer anywhere except my prostate), they agreed to my ADT holiday. I’m 16-weeks in and hopefully it remains undetectable (I have my labs again tomorrow 🤞🍀).

Hope this helps. I found my most aggressive treatment was at the direction of MD Anderson. Local MO’s administer “standard of care”...cancer center of excellence hospitals create the new standards of care.

Best wishes on your journey!

James

Blueslover profile image
Blueslover in reply toJamesAtlanta

Thanks James

Boywonder56 profile image
Boywonder56

When did you get prost. Removed ...thought it was a nono.....as i was told..

JamesAtlanta profile image
JamesAtlanta in reply toBoywonder56

My journey began at age 53, 5-years ago.

Year 1 was radiation to the spine and early chemo, plus ADT.

Year 2 1/2 To 3 1/2 added Zytiga.

Year 3 1/2 was my prostatectomy.

Year 4 1/2 was my pacemaker (had electrical damage, likely from radiation).

Year 4 3/4 was start of ADT holiday - off all meds.

I’m “oligometastatic”, meaning I had 5-METs or less (I only had 1 - in the T8 vertebra.). They are challenging the “conventional wisdom” of no prostate removal after PCa spreads in oligometastatic patients. (The old horse is out of the barn...so no need to remove the prostate.)

Before the surgery I was given a circulating tumor test (nothing evident), a prostate rectal exam with a coil (ouch!), a PET scan and a bone scan. The cancer was “inactive” in my spine and there was no sign of cancer outside the prostate. So they said let’s try taking it out and see what happens. The tissue samples after the surgery revealed “clean margins”, too.

So, that’s how I had a prostatectomy ... certainly not the conventional route. But so far it’s working! :)

Hope that answers your questions.

Best,

James

Rondief profile image
Rondief

Congratulations brother!!! I’m 9 months after a RP, 4 Mets, 6 chemo treatments and a PSA of 0.26. I hope I’m where you are in 5 years

mcp1941 profile image
mcp1941

You will have many more anniversaries to celebrate. I was DX in 1996 PSA 95 and given only a couple of years to live. Here I am in my 24th year and still fighting PCa.

JamesAtlanta profile image
JamesAtlanta in reply tomcp1941

Now that’s a testimonial! Congratulations! You are an inspiration to us all!

Best wishes,

James

monte1111 profile image
monte1111

Great news! The 5 year survival statistic keeps clicking up. And that statistic is certainly out of date. I salute you, and our fallen comrades. Happy Mother's Day to all the awesome moms out there.

j-o-h-n profile image
j-o-h-n

5 years!!! Sign on the dotted line for 20 more.....(at least)............

(Happy mothers day to all the great Moms out there in Cyberland)

Good Luck, Good Health and Good Humor.

j-o h-n Sunday 05/10/2020 5:43 PM DST

2waydvd profile image
2waydvd

Congrats James, you give me hope as I am just 1 month into my journey into the battle of the beast.

JamesAtlanta profile image
JamesAtlanta in reply to2waydvd

You can do it! You have lots of support here...and there are lots of medical treatment developments both recently and on the horizon!

Look forward to congratulating you on your 5-year, and 10-year, etc!

Best wishes,

James

Steve507 profile image
Steve507

I heard those words over the phone in Oct, 2019.

Like your post!

Many people say they fight the cancer?. Do you see your journey as a fight/struggle or a determined humility... or?

JamesAtlanta profile image
JamesAtlanta in reply toSteve507

Probably all of those. My MO at MD Anderson said to treat it like a chronic condition - like diabetes.

I just put my head down and keep pushing through. So much to live for ... and what’s the alternative!? ;).

One day at a time!

Good question!

James

oilcan4 profile image
oilcan4

Congratulations. I hope you continue to be well

Thinus profile image
Thinus

Basically in the same boat as you ! Congratulations

Concernedwife24 profile image
Concernedwife24

Way to go! I hate to ask this but how has your quality of life been? My husband is just starting all this. Had a prostatectomy in march. First PSA is 4.88. So probably more treatment to come. We are both afraid of the treatments. Sometimes my husband says maybe we shouldn't do anything and live life un till it spreads and then he dies.

I usually convince him that he will be alright. We will get through this. He is 61. Stage t3b.

JamesAtlanta profile image
JamesAtlanta in reply toConcernedwife24

I have found many of the treatments to be not nearly as bad as I expected. Chemo wasn’t too bad. I walked 3-miles 4 days after the surgery, albeit with a Foley catheter! So that was Ok. Had no side effects from Zytiga.

It is the ADT that really causes all the issues. But it also keeps us alive. So you just have to learn to live with it.

The most important thing is to get regular exercise and do some light strength training. Once you lose muscle mass, it’s really hard to get it back.

Hot flashes are awful. But you just have to think, I’m just a few minutes away from feeling great! And grin and bear it.

The worst is the loss of testosterone and the impact on having a sex life. (Or not having one.) That’s bad for the patient and their partner. Can’t really describe the “wrecking ball” ADT has on both desire and the ability to perform. You can’t really explain it. It goes to the core of being a man. That’s the toughest thing about this, at least for me.

I’m blessed with an amazing wife. She tries to understand. I’m praying this will get reversed during my holiday.

Tell your husband it’s worth it! You just get up, dust yourself off, and get on with life! That’s how we get to spend valuable time with our loved ones! And there isn’t really an alternative! Just do it!

Hope this advice helps. I know how tough this is. But we’ve all been through it, or are experiencing it now. So ask for help. Someone here has the answer to just about anything. And there is an incredible amount of support here!

Best wishes,

James

dmt1121 profile image
dmt1121

That's great news. Congratulations!

As someone who has another year to go before I reach five years, your story is uplifting.

Thank you for sharing it with us. May you have many more five year milestones!

dorke profile image
dorke

Wish you many more

joeguy profile image
joeguy

Congrats on you great response ! Did you have to get a pace maker because of the heart effects of ADT? I started having heart issues after just a few months on ADT, and I am also now on an ADT holiday....6 months in.

JamesAtlanta profile image
JamesAtlanta in reply tojoeguy

Honestly they don’t know what caused it. They suspect the radiation, since they were hitting my T8 vertebra. I actually asked if it was OK to “shoot the radiation through my chest to get to my vertebra...”. I was told, “ yes, we do it all the time...”. So much for that... ( I had not learned yet that you have to really research and be a strong advocate for your own health. That’s an important lesson...)

But I’ve also had chemo and ADT. So who knows...

I don’t have traditional heart disease, at least that’s what my cardiologist says. He said last week that I just have an electrical issue that keeps my heart rate from elevating above about 110bpm. With my pacemaker, I can get my heart rate up to 155bpm. I even started jogging a little bit.

Amazing technology!

Best wishes,

James

snoraste profile image
snoraste

Well done James. Looking forward to the 25th anniversary!

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