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! 😀And more to come!
Have a great day today!
James
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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!
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
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
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!
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.
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. I’m so happy for you and your family.
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
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
great to see you able to write all this chapters in your life . Funny thing about the future especially with this beast , we truly don’t know what we don’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 … maybe even dare I say “cure”
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.
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, 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!
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.
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.
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.
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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Best, James
Radiation & Oligometastatic PCa.
My journey wth metastasized PCa
Prostate cancer gleason 9; 88 years of age
