Hello , Christmas time around the corner . Anyone here have similar to my cancer . Oligo-metatastic to 1 pelvic lymph node . Had 3 fractions SBRT to the tumor , then 25 imrt to the entire pelvic field . . Tall Allen sent me a link in the past that there is hope for a cure in this situation . I would like to know if anyone out here who stopped ADT , Zytiga , Prednisone after 2 yrs and didnt need any more treatment except blood draws ? Remission . ? To me thats a Miracle . Please speak up and tell us of all your remissions especially the one that shares my path . SemperFi , Brothers and Sisters , Merry Christmas , let the Miracles Begin and thats an order .
Any Miracles out there ?: Hello... - Advanced Prostate...
Any Miracles out there ?
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reconjj
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Hi reconjj,
I was originally dx'ed in late 2017, a PSMA PET scan (clinical trial of Pylarify) showed 10 pelvic lymph nodes, and I had a Gleason 9 (5+4) disease. Started Lupron and Abiraterone (+Pred) in January 2018, PSA went undetectable around July 2018, had radiation to prostate and whole pelvis, with an extra boost to the identified mets.
In January 2020, I stopped the Lupron and ABI (2 years of therapy), and I've been undetectable for almost 3 additional years (except for a couple of small bumps - the test I get detects down to 0.015, and I had a 0.017 and a 0.016, but my doctors consider that to be noise).
So, I'm still believing I might be cured 5 years after starting Lupron and ABI!
Bruce
Hi Bruce been on Zytiga and dexamethasone for over 5 yrs also hormone injection every 3 months.
just had bone and CT scan all looking good nothing changed in over 5yrs…
I am thinking of coming off Zytiga and dexamethasone and see what happens 🤦♂️
Be nice to have a break.
I will still continue to have the hormone injection
What’s your thoughts
I would like just one more miracle from some science and another Miracle from the Good Lord .
I am in the same boat, waiting /hoping for a miracle. I finished my 2 years on LUPRON ,last injection June '22. Finished Radio Therapy/ EBRT December 2020.
My next PSA -6 months since my last PSA - will be April 2023. So that one will be a big deal for me. It will be first PSA without having had LUPRON since treatment began. My RO said my cancer is curative, hopefully he's right.
"We can do the impossible immediately-miracles take a little longer"
Four years since DX of t3bN1M0+SV on 04Dec19. Last monthly Lupron Sept20, after HDR-BT/IMRT June19. PSA still oscillates between <0.02—0.04, T recovered to 800. Perhaps it’s a cure, won’t know till the fat lady sings. Lots of good outcomes on here with HDR-BT!
Heading in your direction but still underway. Oligo-metastatic in 01/2022, ADT started 02/2022, IMRT to pelvic, prostate bed and spots in 03/2022, undetectable since then. Will stay on ADT in 2023 and then stop & see.
MIRACLE ??? just what would be my MIRACLE 🤔
My Gleason 10 treatment began in April 2015 with a bilateral orchiectomy followed by cryoablation of right half GL10, IRE for lesser remaining PCa in left half, an experimental non-FDA approved (at that time and still) immunotherapy in-situ injection in right half, then having biweekly Cypionate injections, then a recurrence in left half with employing IRE again and currently coasting along having discontinued the Cypionate injections so Testosterone is close to absolute zero as are any side effects .........
SO a MIRACLE would not be remaining free of Gleason 10 PCa for the rest of my life since that would ACTUALLY BE the results of having employed MEDICAL intervention but instead ......
Waking up one morning to a 2-BALL SACK and FULLY FUNCTIONAL PENIS.
now IMO that would be A MIRACLE!!!!! 👍👍
omg …lol … that’s funny
I was oligometastatic to one lymph node also. T3b, 4+3, saturated cores in one half, SV invasion. Had RP, IMRT short chemo abi and 18 mo ADT. Full recovery of T (740) and undetectable since post op. Wish I had not done the RP but obviously happy with the result so far. Great luck to you!
I was oligometastatic to T-5 in 2016 and 3 rounds of SBRT. Was clear until 2021. After a slow rise of PSA, a PSMA scan found a hot spot near T-4 but not on the bone. That was blasted in July and I will complete 6 months of Lupron and Erleada in early January and am hoping for another three year run. So, almost is not bad.
A Grunt indeed . Coming home yes a miracle . But Agent Orange will have the last word .
See the latest post in my profile.
The adult daughter of a condo neighbor here in Los Cabos was visiting. She knew about my APC and asked me a very poignant question: “Would you be willing to accept a miracle?” That took me aback for a moment as it sunk in. She is a religious type and me, not so much. But it seemed clear I should open myself to accept a possible miracle, in whatever form it might come. I replied Yes.
That was nearly ten years ago. Currently I am modified BAT and only take Orgovyx for one out of 4 months to prevent CRPC from emerging. I had SBRT to visible oligo nodes followed by Lu-J591 as “cleanup” treatment attempt. PSA 0.048 and following, so far. Close enough to miraculous 15 years after my Diagnosis. Perhaps a miracle is a process and not an event.
Thats a great story , MB . You just never know when and how this will all end .
Awesome stuff MB. I am religious but have been despondent over ADT. Your story reminds me to be open to a miracle.
Love that story as well Mateo Beach. Especially after reading your Bio. BTW I think I saw one of your replies mentioned Bend, Oregon , I’m from Bend and wondering if you have used Saint Charles cancer center for your PC treatment? I’m presently going through Salvage Radiation. G9 as well.
Hi Taylor. Yes I am from Bend OR. Though spend some months in Cabo also. It’s a good combo! Yes my MO is Todd Clover at St, Charles Cancer Center, and my RO there is Nick Boehling. Both good guys.
Is he treating the pelvic lymph node fields as well as the prostate bed in your salvage RT? With GS 9 I would insist upon it, and it is the current standard for high risk. For me he only treated one side of my pelvis with 2 PSMA positive LNs in 2019 despite my questioning this. Only to have a positive LN on the other side in 2022. That was a mistake in retrospect.
Your PSA was too low on first PSMA scan to show anything, but is good to have a baseline. It takes a PSA of around .20-.25 minimum before visibly avid sites to be seen. Hopefully there are none there!
If you are still living in Bend it would be great to meet up somewhere in person. We are returning to Bend this week (Dec20) and will be around there until early February. I’ll send you a PM with my contact info. Paul
Yes I live out by Tumalo Resvr. and met Dr. Boehling on my Doctor day after my RT. because Dr Omizo was out of town. Really like both of them. Anyway got your message and will reach out.
Thank you for your post and your USMC service. Never served but have much respect for those did. I’m just behind your treatment schedule, GL 9 (4+5), cT2c/T3b, 14/16, N1M0, Dx. 6/2021 - delayed by COVID but also b/c I was age 47 at DX - PCP didn’t check PSA until I pushed in person. Anyways, I started ADT (Firmagon, then Lupron+Abi+pred) in 7/21, EBRT (IMRT?) to prostate & pelvic bed 9/21-10/21, HDRT in 12/21. So this post is super helpful for what happens to my treatment program in 2023.
Had surgery 2/18 with PSA of 14. GL9 and T3bN1M0. Immediate BCR of .9. Went on Lupron and Zytiga and waited 8 months for SRT while my incontinence got better. It has been 18 months since I stopped ADT after 2 years. Still undectable, although my T is only in the 200's.Holding breath with crossed fingers and toes every 3 months!
I was DX at 69 with a Gleason of 6. They found only one lymph node involvement and it was biopsied with a G6 also. I did 3 months of ADT before SBRT (44 rounds) 25 to prostate and 19 to lymph node / abdomen. After 2 months on ADT I was undetectable with PSA. I stopped ADT after 18 months and now my PSA is barely detectable. I am hopeful......
Oligo-metatastic…contact Dr. Gordon Grado in Scottsdale, AZ. He is an expert with this diagnosis…with Oligo-metatastic disease…if you can be cured, he’s your best chance in my opinion.
I have been on a similar path. Please see my profile for details. I’ve been off all cancer medication since 7/17/19. PSA is currently .02, while T is 186. We monitor quarterly, and are cautiously optimistic.
Here's my clinical history, similar in that after surgery and SRT failed., triplet therapy to the PLNs has brought 4+ years progression free.
I'm not ready to say "cure" but I'll take the four years off treatment.
Clinical History
Well, I had a recurrence after surgery. I got a PSMA and saw one cancer spot in lymph node in pelvis region. Underwent standard radiation for 40 days with lupron and Zytiga for 8 months. After a year of treatment, had another recurrence. PSA rising from .09 in August 2021 to 1.48 in November 2022. All scans to date do not see cancer yet. Active surveillance for now until a scan sees the cancer. Seems that killing this cancer after initial treatment fails is not likely for most.
Science, treatments, and advances in PC treatment are what create results. Thanks to the many people involved and all the PC cancer patients that have participated in clinical trials that get us there.
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