Oligometastatic PCa - There’s Hope!! - Advanced Prostate...

Advanced Prostate Cancer

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Oligometastatic PCa - There’s Hope!!

JamesAtlanta profile image
22 Replies

For those who have followed me the last several years, I wanted to give you an update on me. And for those that have been diagnosed with oligometastatic PCa, I wanted to share with you my journey and current results...hope it is helpful!

The short version is that I was diagnosed with stage 4 PCa in 2015 at age 53, with 1 met in my T-8 vertebra (extreme pain). PSA was 227, Gleason 4+4=8. Radiated the vertebra and started hormone therapy immediately. 6 rounds of early chemo in the summer and fall of 2015. PSA was undetectable in 12-weeks and stayed that way for over a year.

My PSA started rising slowly in late 2016, so I decided to seek a second opinion at MD Anderson (my local doctor was totally supportive of this).

I realized on my first visit that the care is really dramatically different than what I was getting locally, even thought we love our local MO. I was glad I had this new relationship at MD Anderson. They worked as a team with my local MO - treatment plan set by MD Anderson, locally I had labs done, shots administered. Scans performed at MD Anderson. To start with, we agreed to add Zytiga if PSA approached 2.0

They added Zytiga + dexamethasone in December of 2017, when PSA reached 1.8. PSA immediately went back to undetectable, where it remains today.

My MO at MD Anderson decided to really be aggressive because I showed no sign of PCa outside the prostate. So, after a PET scan, Prostate MRI (with a coil - ouch!), and circulating tumor cell tests all coming back negative, I had my prostate removed in the summer of 2017. Clean margins. Continued hormone therapy, including Zytiga until today. (Also had a pacemaker installed a few months ago - the radiation apparently caused some issues with my heart rate not going above 108 bpm. Highly recommend Cleveland Clinic for heart issues.)

That brings me to today. Just left my doctor’s office and I am officially starting my ADT holiday today! The plan is to measure my PSA and testosterone every 8-weeks and see how I do. The hope is a durable (long term) remission or a cure.

So grateful my oncologist has kept Fighting this with me, treating me as an individual and not just following the standard of care. I’m convinced that had we not removed my prostate, my cancer would have continued to advance.

There is hope with this new approach! And I have learned the importance of being your own health advocate! And I have learned so much from everyone on this site...

I remember when I first found it, I had virtually no idea what everyone was talking about - particularly all the abbreviations! ;) But everyone was so helpful- when I really needed advice, I would 1:1 message members and they would genuinely make the effort to help me make the right decisions ... or at least help me know the questions I should ask my doctor.

I will keep everyone posted periodically on how my “vacation” goes! I do hope this post helps others that have a similar situation! Keep up the fight!

Best wishes,

James

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JamesAtlanta
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22 Replies
greatjohn profile image
greatjohn

Wow. Congratulations! You are living the dream!

gJohn

JamesAtlanta profile image
JamesAtlanta in reply togreatjohn

Thanks, John!

So funny you choose that phrase - whenever anyone asks me how I am, I always say, “living the dream!” Or “LTD” for short!

Hope you are well! Looking forward to more posts about food! I love to eat, too!

James

6357axbz profile image
6357axbz

Hey James, I’m oligo with one or two bone mets and currently under the care of MD Anderson in Houston. I’m doing well and a symptomatic. Who is your MO there?

Randall

erjlg3 profile image
erjlg3

Hi James!!!

This is so GREAT to hear!! Such wonderful news! Thanks so very much for the update. I will look forward to hearing how your vacation goes and how you are feeling and all of the details. Elgie was told he could have a vacation eventually but that never happened. I'm quite excited for you....as you must be also! Please do keep us posted. I sure hope I don't miss the updates :) So many good wishes for your future adventures.

Most sincere,

:) Jackie

Grumpyswife profile image
Grumpyswife

It's good to hear about your success and thanks for keeping us informed as it gives hope to others.

Nicnatno profile image
Nicnatno

James, glad to see you are doing well with your journey. Enjoy and live life to its fullest.

Nick

GoBucks profile image
GoBucks

Great report. Safe travels and have a wonderful vacation!

Bon Voyage James! We all need a vacation ...if it works for one of us it might work fir others . I dream of a vacation myself someday .Take care . Scott🌵

Schwah profile image
Schwah

Enjoy your vacation. You earned it. I too am enjoying mine for about 9 months now. One suggestion. If you can afford it, do a psma test if and when psa goes above 1. They cost about $3000 but the best imaging out there, or so I’m told.

Schwah

JamesAtlanta profile image
JamesAtlanta in reply toSchwah

My MO told me that if it goes up to .3 or higher, she wanted me to go to UCLA for that very testing. You are a mind reader! Thanks for the sage advice!

Best,

James

Fdccs profile image
Fdccs

James Atlanta, you've made my day!!

Out of interest, did you/do you take any supplements or made any other changes?

JamesAtlanta profile image
JamesAtlanta in reply toFdccs

Good question. I have not used supplements. But I have lost 20 lbs by watching my carb and calorie intake and by exercising 4-5 times per week. Makes all the difference!

Good luck in your journey - and thanks for the well wishes!

James

snoraste profile image
snoraste

Best wishes James - looks like you're on the right track. Please keep us posted.

dockam profile image
dockam

Wonderful news Brother. Enjoy it and here's to a long "vacation" Safe Travels

tom67inMA profile image
tom67inMA

Awesome news! I really hope you live the rest of your life without the cancer returning. Better yet, I hope you're at the leading edge of a wave of more and more men getting durable relations and cures. Newer drugs and more aggressive treatment hopefully will make stories like this more common.

JamesAtlanta profile image
JamesAtlanta

Thanks, my friend! Good luck on your vacation, too! We are all pulling for you!

James

Jackpine profile image
Jackpine

James,

Awesome results and way to kick this things butt.

Nice to hear of the wins!!

Jscjac profile image
Jscjac

Wow, James ! This is fantastic news ! I am so happy for you and send hope for continued success. It’s always uplifting to read about positive outcomes. LTD, indeed. 😉

JamesAtlanta profile image
JamesAtlanta

LTD!

erjlg3 profile image
erjlg3

How are you doing and feeling James since 5 months on the new "Deam" vacation?

🌻Jackie

JamesAtlanta profile image
JamesAtlanta in reply toerjlg3

Hi Jackie! So nice to hear from you! All is still well! I’ve been on my ADT “holiday” for 5-months. PSA remains undetectable. And my Testosterone level is now over 200 (and hopefully continuing to climb). Amazing what a little “T” can do to make you feel better!

How have you been? We think about you often and hope you are doing well! I know Elgie is looking down on you smiling today!

Best wishes!

James

erjlg3 profile image
erjlg3 in reply toJamesAtlanta

That is so great to hear James!!! :) I'm so glad psa is staying down and testosterone is helping you to feel good :)

All is good here 🌻

Stay safe :)

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