My Oligometastatic Journey Continues…

[JamesAtlanta]

Hello friends,

Thought I’d update you on my journey, with all its twists and turns. Let me remind you where I’ve been and what’s in store now…

In the spring of 2015, at the age of 53, I was playing golf and hurt my back. Thought it was a pulled muscle. After a couple of months, with my back getting worse and worse, I was finally diagnosed with stage 4 metastatic prostate cancer. PSA was 227, 1 met to T8 vertebra (oligometastatic), Gleason 8.

Immediately started ADT, radiation to the T8, and had early chemo following the recommendations from the Stampede Study. PSA went to undetectable in 4 months and stayed that way for almost a year. Then my PSA started to rise again. When it reached about 1.8, my oncologist added Zytiga. PSA immediately went back to undetectable.

In the summer of 2018, I had a prostatectomy at MD Anderson. They were hoping for a durable remission or a cure.

(Had a pacemaker installed in 2019 - had some electrical issues possibly due to the radiation…)

In January of 2020, we decided to give an ADT “holiday” a try. My PSA had been undetectable at this point for 2-years. I’d been on hormone therapy for almost 5-years and needed a break. I felt pretty bad and had lost a lot of muscle.

My testosterone slowly rose to about 400 and my muscle mass came back. I could lift weights and use an elliptical for an hour or more. Really felt like my old self again, which has been great!

2021 rolled around. PSA remained undetectable. Some of my tests started to come back “inconclusive”, which had me a little worried. But we remained cautious. Finally, in July, my PSA registered 0.2. That was the first positive PSA in 3 1/2 years. I kept a close watch on it every other week. It was slowly going up. My oncologist wanted it to rise to about 2.0 so that we could see where the cancer was growing. He felt I had done so well with radiation therapy before that if we could find it, we could radiate it again. And also repeat ADT.

Well, I just left MD Anderson a little while ago. Had a PSMA PET scan (they started offering it last week). They found a met in my left hip. I am going to return next week for a biopsy and start ADT immediately. They will give me 3 rounds of radiation to the hip in a couple of months. Hopefully, if my PSA goes back to undetectable, we will try another holiday in 8-9 months. I believe with targeted therapy you can keep successfully fighting the disease and also recapture some real quality of life. Like they say, “you live EVERY DAY, you only die ONCE!”

Anyway, that’s the latest on my journey. Thought it might be helpful for others that are oligometastatic.

Hang in there, fellow warriors! It’s all worth it! My wife and I are going to be grandparents this coming spring!

James

[Chiquis]

Glad to hear you are doing well.My husband is schedule to have a PSMA the 20 of this month🙏

Congratulations that you are going to become Grandparents!! What a joy🙏

Thank you so much for sharing your journey.

Many blessings... you are not alone.

[Hidden]

Also dx'd at age 53 but May 2019 but nonmetastatic.

[Gearhead]

Thank you for this clear summary of your journey. Your experience relates to, and potentially benefits, what many of us are going through.

In hindsight, do you regret taking the ADT holiday in January 2020 even though the long-term ADT treatment was substantially impaction your QOL?

[greatjohn]

Sounds like you’re having a blessed & lucky journey.

[6357axbz]

Great list! Thank-you

[Jscjac]

Good to hear your update. Sounds like you and your docs are staying right on top of things and doing what needs to be done. I’m sending hope for positive outcomes. Keep us posted ! And congrats on the impending grand parenthood ! ☺️

[noirhole]

Great response to all of your treatments. Best of luck!

[Hidden]

Everybody's journey is a little different. We look forward to hearing about yours. Grandkids are the best! Enjoy

[timotur]

Nice report James, you’ve had great results fighting this. Thanks for giving us insight into oligometastatic treatment options. Hope your PSA goes back to u/d soon.

[Spyder54]

James, Thank you. Inspiring story. Seems like you are close. Best of luck withe Grandchild. Mike

[GeorgeGlass]

You're still doing well James. Your attitude is fantastic. It so important to just keep taking things in stride and fighting smartly, like you are. God Bless and good to here about your grandkid on the way!George

[Schwah]

Your journey is very similar to mine. I just ended my vacation after about 18 months because a PSMA scan showed a met on L-5. I had it radiated and I’m back on adt and Zytega. Are you adding Zytega too. I also threw in Provenge because all studies indicated it worked better earlier and had minimal side affects. Bad news was because I was still castrate sensitive I had to pay out of pocket a crazy amount. Guess you can’t take it with you.

Schwah

[JamesAtlanta in reply to Schwah]

Sorry for the slow reply … just saw your message. We switched from Lupron and Zytiga (before the holiday) to Orgovyx and Erleada. Orgovyx is supposed to be a little easier on the heart and it is also faster to get out of your system when we try the next holiday. Nice to move to pills from shots, too.

I have been undetectable since November and completed 3 rounds of high intensity to my left iliac in February. Hope to stop Erleada in late 2022. If that goes well, hope to stop Orgovyx sometime in 2023.

Best wishes!

James

[E2-Guy]

Thanks for the update James. Keeping my fingers crossed that your PSA goes back down to the undetectable level again.

[BigTex3]

I wish you continued success on your journey. Congratulations on becoming Grandparents. I hope to be able to post the same on here one day. Which Dr are you seeing at MD Andersen. I see Dr Pilie.

[JamesAtlanta in reply to BigTex3]

I see Dr. Baji Jana at the League City office of MD Anderson.

Best wishes,

James

[Calboo]

Dear JamesAtlanta,

Thank you for sharing. I too am Oligometastatic. My journey started with a measured PSA of 60 on a Life Insurance pre-screen. From there, it was realized that I was a Gleason 9, started ADT (Lupron 6 month), had 6 Cycles of Taxotere, followed with the some Rad Cyberknife on my T2 and IMRT (~79 Gy) to my prostrate area. PSA was essentially undetectable, went on "holiday" , and after about 6 months , the PSA came back. I didn't have my prostate removed so I wanted to see where my body would put my PSA level. After it reaching 5 , I relented and went back on ADT. PSA plummeted and stable. I am 56 now, was 52 when this started. I too am having issues with the muscle loss and am working on getting my AIC back down since it skyrocketted since being on this therapy. Thanks again for sharing, count your blessings and Godsped on your travels.

[HopingForTheBest1]

You are absolutely correct that your post is so helpful and hopeful to many of us. It's also a reminder that having just one met can not be ignored. Thank you. Wishing you continued success. As I am one of your followers, I look forward to your future posts.

[London441]

Great success! It’s nice to see good news from a ‘fellow oligometastatic ’. Looks like targeted therapy has really helped, I’m happy for you.

I’ve been off ADT for 13 months. In keeping track of my testosterone return I noticed that I started feeling slightly more energetic, better mood, improved body composition etc when it got to 200-250 or so.

Only a slight difference though. I credit my strength and cardiovascular fitness habits for this.

My baseline T was 700, and I thought I wouldn’t feel anything until I got back to at least 3-500.

Not so! and it’s a good thing since I may never get back to that level.

Keep your workouts up , but if you should have to go back on ADT, I suggest trying to INCREASE frequency and intensity of them, no matter how tired you feel some days.

I’m not accusing you of relying on testosterone to make you feel like ‘your old self’, but a lot of guys do. Our ongoing reliance on ADT makes this a bad idea.

The more fit you are, the less you will notice the difference between normal and castrate level T.

You’re not even 60 yet! Take advantage of it.

[JamesAtlanta in reply to London441]

Completely agree regarding exercise. I hit the gym about 4-5 days a week these days. Do elliptical and treadmill a combined 1 hour (goal is 450-500 calories) and 3x/week I do a circuit of weights. I have to limit my cardio due to my pacemaker (can’t get my heart rate over 130bpm)… I felt much more excited to exercise when my T reached 200+. It’s about 400 now. Unfortunately, will be 0 later this week when I get an injection of Firmagon (bummer), but I’ll just have to force myself to keep exercising - and look forward to my next ADT holiday in 2022.

[London441 in reply to JamesAtlanta]

If you keep up your workouts on ADT the holiday will be that much better. Faster T recovery and not so far behind.

Also if you do get back on ADT try for rhe newer ADT pill relugolix. Oral administration vs injection is nice but the best part is much faster T recovery.

If you’re already fit, I suggest Zone 2 training. It’s not hard because it’s only 60-75% of max. You can do it for long periods relatively easily and it’s excellent for keeping your cardiovascular base solid. Enjoy everything you can!

[JamesAtlanta in reply to London441]

Excellent advice! Thanks!

[treedown]

I was not considered for a RP and my PSA was lower and only LN involvement, though the decision to get one would have been difficult. I am stopping Zytiga in 2 weeks and been off Lupron 2 weeks technically. Hoping for a good remission PSA <.04 last T <1. A little muscle mass would be nice I would like to see some speed increases on my bike. 40 miles last night mostly gravel. Last speed increases were right after dx and loss of weight.

[RCOG2000]

Thank you james. Very helpful information

[j-o-h-n]

The Sage says:

1. Good fighting - keep it UP....

2. Will (or is) be 60, so congratulations...

3. Spoil the upcoming grandkid...

4. Get the hell out of Atlanta...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 10/02/2021 12:42 PM DST

[Break60]

No doubt oligometastatic is a “ better” type of Pca even if you’re high risk as measured by Gleason score as am I. I was diagnosed at age 69 with Gleason 4+5 in July 2013 with PSA of 6.6 but low tumour volume. Had open RP in Sept 2013 : Result was positive margins, SVI , ECE but no lymph node involvement. After I had BCR to 0.3 in mid 2014 I had SRT by IMRT along with six mos. of Lupron; after a scan found two suspicious lymph nodes I had IMRT to all pelvic nodes in Sept. thru Nov. 2015; back on 13 mos. of lupron ; after BCR to 1.9 I had an Axumin scan then had SBRT to right femur in 2017; back on 13 mos. Lupron; after BCR to 2.0, I had ga68 psma scan then SBRT to a rib and scapula in late 2018; realizing I needed full time ADT since holidays didn’t work, I switched to estradiol patches in early 2019 and had no BCR until late 2020. PSA has been steady at 0.5 and T is less than 10.

I consider myself very lucky: no visceral Pca and just a bone here and there which SBRT has eliminated. I’ll be 78 in January.

Bob

[JamesAtlanta in reply to Break60]

That’s an amazing story! Keep it up!

[Hidden]

Good luck so far so good.

[Hidden]

Pre Congratulations for the spring grandchild! You help us all James . You and I Have some similarities . I also was 53 spring of 2015 dxed 4+4 .. Twist and turns put it well . My pc was in pelvis only no met outside . I was shut down almost two yrs with tubes and foley.After that and imrt I went clear . Five years so far … It’s kind of one of those things where the longer you go clear the more the odds of a return seem..? APC is a 12 round title fight .. you’ve been through many rounds already … Stay strong ! Scott

[JamesAtlanta]

Thanks, Scott! You hang in there, too!

Best wishes,

James

[PGDuan]

Thanks for sharing your story James. We’re similar age and in similar circumstances. Just taking it one day at a time while watching my PSA tests and plans for a PSMA PET once it gets high enough to see what is going on.

I find notes like yours particularly useful since it seems there doesn’t seem to be a real standard of care when BCR after radiation/surgery/ADT treatments. Best of luck…and keep on moving.

[erjlg3]

Congratulations James!!! You're doing an awesome job of beating this and Congratulations PopPop😁 You're outlook is awe inspiring.

Sending healing love your way.

🌻Jackie

[JamesAtlanta in reply to erjlg3]

Thanks Jackie! So nice to hear from you!

Best wishes,

James

[Scout4answers]

Watching your progress with interest as I am just starting down the path behind you. Thanks for sharing James