My Oligometastatic PCa Journey Contin... - Advanced Prostate...

Advanced Prostate Cancer

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My Oligometastatic PCa Journey Continues...coming up on year 9!

JamesAtlanta profile image
JamesAtlanta
โ€ข45 Replies

It's been a while since I've posted. But wanted to offer a note of encouragement for those here that have oligometastatic prostate cancer. I was diagnosed in 2015 (227 PSA, Gleason 8, 1 MET in the spine) and still going strong. After years of hormone therapy, 6 rounds of chemo, a prostatectomy, and 2 different rounds of radiation, today I'm starting my second hormone therapy "holiday".

When I was first diagnosed, life expectancy was only 5 1/2 years. Oligometastatic (5 or fewer mets) prostate cancer treatment was the same as advanced metastatic prostate cancer. There was no PSMA PET scan availability. Secondary meds were just coming on-line. Treatment options were limited.

Fast forward 9-years and new innovations and approaches are available. For those that are oligometastatic, here's a study that suggests the benefits of intermittent hormone therapy combined with targeted radiation versus only continuous hormone therapy. My radiation oncologist at MD Anderson is one of the authors of the study. pubmed.ncbi.nlm.nih.gov/370...

As for our journey, since this all began our children have graduated college and both gotten married. I had the joy of walking my daughter down the aisle a few weeks ago. And my wife and I are grandparents! Of course, no one wants to deal with the challenges of PCa. But getting extra time is worth it! There is hope!

You can see the details of my entire journey in my profile, if you are interested. Just click on it! As I was updating it, I realized what a journey it's been from the day the doctor told me, "You have cancer..." Today, I know that was the beginning of learning how to LIVE! ๐Ÿ˜€And more to come!

Have a great day today!

James

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JamesAtlanta
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JohnInTheMiddle profile image
JohnInTheMiddle

Wonderful! Such fantastic results James! I also really appreciate how readable your notes are, including your bio. Your message is also compelling because it's not just "feel good" but it's "feel good with reasons". Continued success for you! And congratulations on walking your daughter down the aisle a little while ago!

JamesAtlanta profile image
JamesAtlantaโ€ข in reply toJohnInTheMiddle

Thanks, John! Best wishes! James

timotur profile image
timotur

What a great run, and courage to navigate all the treatments and deal with the side effects, such as a getting a pacemaker. Congrats on your well-deserved ADT holiday, hope it goes well and recharges you. Try to exercise a lot during that time and gain as much fitness as you can for the next run on ADT. Cheers- Tim

JamesAtlanta profile image
JamesAtlantaโ€ข in reply totimotur

Thanks, Tim! Completely agree on the exercise front! Been remiss lately after having been very diligent for years due to fatigue from ADT and other meds. Exercise starts today! ;) Best, James

MoonRocket profile image
MoonRocket

Thanks for the update. Here's to another 9 years!!Cheers ๐Ÿป๐Ÿฅ‚๐Ÿป๐Ÿฅ‚

JamesAtlanta profile image
JamesAtlantaโ€ข in reply toMoonRocket

๐Ÿ˜€

rickyfish56 profile image
rickyfish56

Thank you so much for posting this James! You are an inspiration, and clearly articulated the reasons to fight this beast with all the tools available! Praying you will be at your Grandchilds Graduation! God bless you!

JamesAtlanta profile image
JamesAtlantaโ€ข in reply torickyfish56

Thanks! Best wishes, James

hopeful1956 profile image
hopeful1956

Very inspirational indeed. Here's to many more years.

JamesAtlanta profile image
JamesAtlantaโ€ข in reply tohopeful1956

Here's to many years to you, too! James

Huzzah1 profile image
Huzzah1

Great to hear James! I'm also in ATL, who have you used MO & RO? My local MO is Dr. John French, he did his fellowship at MD Anderson. I have made a trip to Houston and my MO there is Dr. Ana Aparicio. Very impressed with everyone.

Mike1971 profile image
Mike1971

Fantastic - thank you!

JamesAtlanta profile image
JamesAtlantaโ€ข in reply toMike1971

๐Ÿ‘

Jscjac profile image
Jscjac

This is such a wonderful update! My husband was diagnosed Stage 4, metastatic (14 mets/mainly ribs and spine), back in June 2017. After his prostatectomy, we sought treatment at Vanderbilt and his PSA remains undetectable. He feels great, except for occasional fatigue, which seems to be a side effect that many guys taking Zytiga experience. He exercises regularly and is a big believer in the benefit of remaining active. Back in 2017, when I first joined in the conversation here, you were quick to answer some of my questions and offer encouragement. My husband was only 61 at the time he was diagnosed and was very fit and otherwise healthy. Needless to say, we were in shock. I just wanted thank you for your support and kindness. Iโ€™m so happy for you and your family.

jtspitfire profile image
jtspitfireโ€ข in reply toJscjac

I'm a Vanderbilt patient as well. .Very happy with my care and staff are great.

JamesAtlanta profile image
JamesAtlantaโ€ข in reply toJscjac

Thanks for the kind words! So glad your husband is doing well! Best, James

Wings-of-Eagles profile image
Wings-of-Eagles

James my main man!

You are an encouragement for countless people. Thanks for all the details of your journey so far. Many many more years to come brother! keep it going,

My own story is dx in November 2012 with Stage 4 , psa at 71,life expectancy 3-5 years. That urologist was fired! Started at CTCA, now at city of Hope L.A. Was on Lupron for only 3 years, but also started Zytiga in August 2014, took 1000mg/day, currently still on 1/2 dose, 500 mg/day. Also I am at 9 1/2years in remission, undetectable, all due to Zytiga, no radiation ,no intervenors chemo. PTL Keep the Faith Brothers! Also encouragement and prayers to Rene Sandburg , Cub and hall of fame Great. recently revealed word of MPCa

Dan in So Cal,aka Wings of Eagles

Ian99 profile image
Ian99โ€ข in reply toWings-of-Eagles

โ€That urologist was fired! โ€ Great line, made me laugh. Well done, looks like a good call. Good luck.

JamesAtlanta profile image
JamesAtlantaโ€ข in reply toWings-of-Eagles

Funny, I had the same thought about Ryan Sandburg yesterday, too! Wish he'd find this forum...bet he'd get a lot of value out of it. Dan, congratulations on your amazing journey! Best, James

Scottybear profile image
Scottybear

Next month is my 5 yrs post treatment..." Gleason 9 with rib met" DX advanced and aggressive with seminals invaded.

Did only 1 year of ADT +Zytiga... and 20 rounds of radiation.

Last PSA was .46 New Oncologist said he has seen patients go 15 yrs.... "how lovely"

I plan to break the record of longest living G9 in history! synchronize watch.... here we go.

JamesAtlanta profile image
JamesAtlantaโ€ข in reply toScottybear

Congratulations on your upcoming 5-year anniversary!! A BIG milestone!

Boywonder56 profile image
Boywonder56โ€ข in reply toScottybear

Im g9 ...ductal hystology..3 mets....starting on yr 7...lupron/ erleada....and a cant catch me attitude...bw

Allan65 profile image
Allan65

great to see you able to write all this chapters in your life . Funny thing about the future especially with this beast , we truly donโ€™t know what we donโ€™t know , and sometimes it just takes to much time to see the patterns and successes. That is a challenge with this slow moving stalker . Heck if it was lighting fast we would have had tons more studies started and completed โ€ฆ maybe even dare I say โ€œcureโ€

Best of luck to a long future

JamesAtlanta profile image
JamesAtlantaโ€ข in reply toAllan65

Thanks! And best of luck to you, as well!

James

Ian99 profile image
Ian99

Inspirational post, James. Thanks for taking the time to give us some encouragement. Continued good luck.

JamesAtlanta profile image
JamesAtlantaโ€ข in reply toIan99

Thanks! And best wishes to you, too!

James

GreenStreet profile image
GreenStreet

Fantastic post James. Great to see it and congratulations for doing so well. I hope you enjoy many more good years. In may I will also be coming up to my 9th anniversary and I am currently an Oligo. Last treatment was cyberknife raidation to pelvic lymph node plus 6 months bicalutamide. Radiation was two years ago. Have been on 18 months holiday. PSA rising but slowly. Last PSA reading was level at 0.07. Hoping for some more years. Good luck.

JamesAtlanta profile image
JamesAtlantaโ€ข in reply toGreenStreet

Thanks for the nice note - and best wishes for continued success with your treatment!!

James

Wife32 profile image
Wife32

Thank you for taking the time to share. I hope you have continued good health!

JamesAtlanta profile image
JamesAtlantaโ€ข in reply toWife32

๐Ÿ‘

Hawk56 profile image
Hawk56

Yesterday was my 10th anniversary of my TRUS Biopsy 23 January 2014, followed by a haunting phone call from my urologist, "Kevin, you have prostate cancer, it's pretty aggressive..."

I had my labs yesterday, PSA results posted, <.04.

I see my radiologist and oncologist on Thursday, expect we will agree to do the last three months on Orgovyx, our plan was SBRT to the PLN identified in the Plarify scan and 12 months of Orgovyx, if that dropped my PSA to undetectable and kept it there, stoop at 12 months and actively monitor.

In these ten years, I've treated four times (see my clinical history in the attached chart), so about three years on treatment, seven off.

My urologist while saying it was an aggressive PCa, felt that after the surgery, I was clear and would not have any problems in the future. I thought, hmmm, the MSKCC nomogram says I have a 30-40-% chance of BCR and the Mx in my T2CNoMx means you don't know if there is micro-metastatic disease that has spread outside the prostate already.

I have viewed this journey through the lens of 3-5 years, treatment decisions that will knock the PCa down, then as medical research brings new treatments into clinical practices, repeat.

So yeah, ten years, Christmas, New Years, daughters graduating from college ( no walks down the aisle though), vacations - Iceland, Colorado, Oregon, Utah, New England, Cherry Blossoms in DC.., anniversaries (up to 34 now)...going skiing with a friend in two weeks.I plan on another 10-15!

There is no doubt this is a lethal disease for many, the opposite is true, for many, it's one that never involves treatments (my ex father-in-law almost made it to 100, he had PCa). The rest of us, well, this may be a chronic disease, managed by treatment, albeit with side effects, manageable.

Kevin

Clinical History
Wings-of-Eagles profile image
Wings-of-Eaglesโ€ข in reply toHawk56

Hawk56.

Awesome story of your journey and all the details. That is the best chart that I have ever seen. Were you a mathematician?!

in any case congrats , from one old "bird "to another

Wings of Eagles aka Dan in So Cal..68 yrs old now,gonna live to 100!!

Hawk56 profile image
Hawk56โ€ข in reply toWings-of-Eagles

no, I disliked high school math, trigonometry, calculus, algebra....I do have a knack for accounting though.

It's a handy chart, especially when a new member of my medical team wants to get up to speed on my clinical history.

JamesAtlanta profile image
JamesAtlantaโ€ข in reply toHawk56

Kevin, congratulation on your 10th anniversary!! That's huge!! And on all the life milestones you have achieved since your diagnosis! My wife and I have our 38th wedding anniversary coming up this June, so we are just a few years ahead of you!

Best wishes and good luck on your next 10 years!

James

Apisdorsata profile image
Apisdorsata

My story matches yours. Now at 8.5 years with oligometastaic Gleeson 4+4 disease. I've had many months of ADT and four courses of RT. I've been fortunate to have had several treatment vacations, one lasted two years. Now the disease is recurrent in an area (sacrum) where I can't have more RT so that phase of my life is done and I'm looking at more continuous ADT.

But I still will try to persuade my MO to let me take ADT vacations in the summer as long as my PSA stays below 1 and the PET shows only the one met. I understand the valid argument for keeping the disease as quiescent as possible so no vacations. But I don't care. I value QOL more than length of life. Would be nice to have a lot of both, though.

JamesAtlanta profile image
JamesAtlantaโ€ข in reply toApisdorsata

Congratulations on 8 1/2 years and wishing you many, many more! Totally agree on QOL! Pray you get your "summer vacations"! ;)

Cheers,

James

dhccpa profile image
dhccpa

Good post. When diagnosed 5+ years ago and all scans had been run (nuclear bone, CT, MRI, 2 more MRIs and 1 more CT three months later, then a PET Bone Scan a month after that), I was told I could have as many as 10 Mets (5 additional appeared on PET scan), but it was very hazy.

Once Lupron was started, only three show up since two years after diagnosis.

I have never been sure about that initial assessment. It was done at a proton therapy center, and they wound up ruling me out for treatment. It was early in proton and I later wondered if they wanted to rule me out because they feared I was borderline for good response. Better to rule this guy out. After that, they dropped me like a hot potato. Just a potential theory on my part, but now hard to answer.

countrymusic101 profile image
countrymusic101

Thanks for sharing James! So happy for you.

I hope to get a break from ADT at sometime as well.

Stay strong and healthy ๐Ÿ’ช๐Ÿผ

JamesAtlanta profile image
JamesAtlanta

If you are unsure, I'd consider going somewhere else for a second opinion. I can tell you that my treatment plan at MD Anderson was totally different than the "standard of care" plan I had locally. I have been able to get my local team and my MD Anderson team to work together - so I get the best of both worlds. Local labs and routine scans in Atlanta and leading-edge treatment plans and capabilities in Houston at MDA.

Best of luck on your journey!

James

Hailwood profile image
Hailwood

Thats wonderful and a real help for the dark days when some of us think that there is little time left. Thanks so much

JamesAtlanta profile image
JamesAtlanta

๐Ÿ˜€

Scout4answers profile image
Scout4answers

You are a inspiration to this oligometastatic guy. I am starting year 3 since DX and looking forward to my first ADT vacation.

Chiquis profile image
Chiquis

I'm so glad to hear from you. Thank you for sharing! There's hope, you are not alone๐Ÿ™๐Ÿ’ช๐Ÿ‘

glgr profile image
glgr

Thanks for the positive, inspiring post and link.

CalBear profile image
CalBear

Thanks for the positive post ! Also recently oligometastatic after a vacation with one tiny spot after a PSA bump to 0.11 was picked up on PSMA. SBRT and ADT underway - very hopeful to think of this thing as a chronic disease rather a certain death sentence.

In many ways getting diagnosed was a blessing - "hey - are you doing the things with your life you really want to be doing?"

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