I have saved these and more since the time of diagnosis 6 mos ago
A Cure for Stage 4 Metasticized aPCa ... - Advanced Prostate...
A Cure for Stage 4 Metasticized aPCa will come one day. We need to survive until that day. At 67 yrs, I am motivated by potential for Cure.
Written by
Spyder54
To view profiles and participate in discussions please or .
46 Replies
•
Pg 2 of article above
Pg 2 of article above
Mike:
This is the link to the original article from the MSKCC:
But removing lymph nodes does not go without consequence
E2-Guy• in reply to
I had eight LN's excised four years ago and it only bought me a little more time. PSA was back up in less than a year.
I think it would be easier to find an RO to radiate the prostate but to find a surgeon that will remove the prostate. The NCCN guidelines describe the alternative to radiate the prostate if there are bone mets. Its page PROS-13. "EBRT to the primary tumor for low-volume M1"
Very interesting. This was published in 2017, does anyone know if any larger studies/RCTs are underway at this time using this approach? If not, why?
It would seem like a win win for almost all sides, increased survivability for the patient, and medical, surgical, and radiologist oncologists get a pay day.
The only losers are the insurance companies.
Swog 1802 at MD Anderson. 1200 men. 600 ADT only. 600 full monty
Thanks for link above Tango65👍
@GP24. At this time only Human Trials for above. Now SWOG 1802 at MD Anderson, and smaller trials at Sloan Kettering Mem. You can have prostetechtomy for paliative QOL if bladder or urinary blockage are issues. Dr Sholz from Cali prefers Radiation for mPCa. I like Dr Patrick Walshes, and Nalkarats thinking of removing the “Mother Ship” when possible.
I just signed consent to join SWOG 1802 yesterday, at the James in Columbus, Ohio. this trial is something like 1276 members, with two arms of half that number each. I do not know how many treatment centers are involved in this trial, but my MO says it is a 'provocative' study.
While not entirely consistent with patient diagnosis and treatments mentioned in article you posted, I am G9 and had an RP, IMRT wt whole pelvic and am currently ADT + Zytiga for 2 years. I am scheduled to come off the ADT + Zytiga this July. My PSA has been <=.1 since Jan 2020. If my next two PSA test are < 0.1, it will be approx 21 months of undetectable PSA. I'm hoping for a long remission once I stop ADT....only time will tell.
P.S. Thanks for the posting. Encouraging...need more of that.
keepinon• in reply to
I am just a bit ahead of you TomTom. Same course as you. I stopped 2 years of Zytiga 2 days ago. Been <.1 for 2 years. Now it's wait and see with fingers crossed.
A bit further along the same kitchen sink + path - after 2 years of Z + P, went on "holiday" last Aug. Hope my LT 0.1 psa continues for a while - it's nice having testosterone and sleeping thru the nite (mostly). Perhaps aided by IP6 in the a.m., essiac tea at night and CBD + Delta8 THC gummies before bed... Hoping Canada will open up so I can get Dukoral...
Spyder54• in reply to
TomTom. This is the results we would hope for. Then, if PSA does start to rise a few years down the road, they run you thru the C11 Pet scanner and hit any distant mets with SABR and hopefully a return to undetectable. Think we could all live with that?🍀. Best of luck. Stay healthy. Here’s to Life !
That kind of cure will be fine for those who follow us and I wish them complete success. My stage 4, prostatectomy, bones and lymph nodes would be hard to cure at this pt, but who knows?? Was undetectable for a couple of months last year but now good old PCA climbing and aPca probably rearing it's ugly head again... Time will tell.p
Hope this posting is OK, my Dr. has been working on possible solution prior to my immuno injection by him in 2015 for GL10 and others with mets.
businesswire.com/news/home/...
Darryl please remove if inappropriate
• in reply toaddicted2cycling
I'm on a SOC path right now....RP, IMRT and 2 yrs ADT+Zytiga...then vacation....if and when I need more treatment for a recurrency...how would on go about getting the immuno injection you received? I'm G9
addicted2cycling• in reply to
Suggest you click on the info links provided, and fill in required information.
This was my plan at diagnosis 7 years ago. I went to MD ANDERSON and asked to be cut, poisoned, and nuked. I was told that was not possible as it was not approved SOC. Glad to see that it was tried. I guess I should have looked around for an aggressive team. There are trade off to all treatments. Being side effects and quality of life.
My team allowed RP with mets and extension. Worked pretty well. Got to undetectable for a while from Gleason 9/10, stage 4 , bone and lymph node lesions, no clear margins, invasion of all neural and venous bundles out of prostate . A real mess and no target for RT without major peripheral damage. Some times you have to leave SOC behind to survive.
The Devil's in the details.
@Shooter1. Are you saying you had RP + Lymph node removal (how many, and to clear margins?) + adjunctive Radiation to prostate bed and lymph node sockets + SABR to any bone mets + the Kitchen Sink, and find yourself at this terrible place now? Any more detail? Robotics have come so far, and the hdwre/softwre. Had your surgeon done 500 or more? Can u be run thru a C11 psma-pet? Dr Kwon at Mayo says when they SABR these distant mets, we often see a return quickly to undetectable PSA.
Prostate and only 2 lymph nodes that showed enlargement. Surgery showed no clear boundaries in prostate area. It was deteriorated to pt it was hard to differentiate surrounding tissue. 80% involvement of Prostate. No clear margins at all. Lymph nodes were substantially replaced. Going into surgery only painful extracapsular extension was evident, all scans clear other than 2 slightly enlarged lymph nodes.. PSA 53. Pathology after surgery showed Gleason 9/10 throughout instead of G-7 from biopsy. With all nerves and veins out of prostate hot and even unrelated tissue sample showing G-9/10 nerves and veins through otherwise clean tissue, I had a spiderweb of cancer throughout abdomen against bladder, colon and spine which didn't bode well for radiation... More harm than good. 6 week checkup showed PSA up not down. 63.. new scans showed new lymph nodes growing and bone involvement of public bone, pelvis, sacrum and iliac. Started lupron(ADT) and on to chemo.(taxetere). Added Xtandi half way through when PSA rose. Orchiectomy and rebuild of my left thumb. 9 cycles of taxetere until intolerable neuropathy. Continued Xtandi and discovered it was the main culprit. It made me a complete invalid, but dropped PSA to 0.12. after 17 mo. Cut my dose and got my life back. Went back to work, retired, moved to North Idaho, burned right side Oct 2019, PSA continued to drop. 0.00 April 2020, three years into aPca. At 3 1/2 years started to climb slowly. At 4 year started it's rocket rise. Dec 2020 up 10%, Feb 2021 up 50%, March 2021 up 60%, April 2021 up another 33%. Xtandi loosing it's effectiveness. Bone and CT scans in Feb 2021 showed minor uptake in old bone mets.. Alk/phos up in March to double what it was 6 mo. earlier. April up to highest level since early in chemo. Bones mets starting up again, somewhat vigorously. Looking at SABR for mets if new better scans show that may work .
Spydyer54, I have to stop here. Way to much, but should answer most if not all of your inquiry.
Thank you Shooter 1. Man, what a journey. I had immediate failure w Xtandi, and only 2 mos into Zytiga + Prednisone. Awaiting to see. It has been suggested that when one fails, so will the other (hope not). I did have a Genetic Profile and learned that I am neg for BRCCA 1/2 but positive for ATM. I may hv to take a different direction if I can obtain a RP sooner than later. 6 Surgeon turn downs, but persistant in my pursuit. Hang in there Shooter1. Spring is just around the corner.
Keep the positive attitude, lm convinced it helps us all with our battles. They will lm sure find a cure for us all. SheilaF x
I'm about to start radiotherapy of my prostate. I'm concerned about future operation possibilities if I go ahead. My understanding is that once you have radiotherapy, it's very difficult to operate in future. The technology in treatment of prostate cancer is changing rapidly as we all know. I want to keep all my options open for the future. I'm 49 and I'm hoping to have many years ahead.
To your point: go to Youtube and search Dr Sholz (reminds me a bit of Tall Allen in our group). Very well spoken and is a PCa only Oncologist. He believes that Radio therapy for advanced PCa is superior to RP. Several good videos on why surgery is possible after radiation. Its amazing to me how many cyclists in this forum. I rode with26 guys in Santa Barbara for 15 years and many also had PCa. Makes you wonder if those skinny saddles, and all that pressure on the Prostate have anything to do with PCa???
I was diagnosed at 62, late in 2009, Psa 6, Gleason 9, inoperable, and I've had most treatments, abandoned attempt at open RP, ADT, EBRT, Salavation IMRT + Cosadex, Zytiga, 5 doses Docetaxel, 6 doses Lu177,m and Xtandi, which only worked for 8 months like Zytiga, and now I'm on Ra223. and there just is not many options left, so I could be dead in a year, and there is NO REASON why anyone at Harvard Medical School should be painting such a rosy future for future victims of Pca.There are those of us whose luck varies very much to others, and a man might get a very weak form of Pca, and the slightest bit of treatment gives him remission, or he's still OK at 25 years after diagnosis.
But I watched a friend here die under 60 in less than 3 years and almost nothing all his doctors tried to do for him worked. Things like Cosadex and PARP inhibitors hade his Pca progress faster, and 10 chemo shots failed, and then mutant Pca started in his liver, and he died fast.
So, what would I say to the bright students at Harvard Medical School? Get ya darn fingers out, stop being lazy, there's no time to waste.....
Patrick Turner.
Stage 4 in August of 16. As I oncologist said no one wants cancer but there’s never been a better time. 🙏🙏🙏. Keep on fighting warrior
Greetings Spyder54,
I see you gave us some info regarding your bio but would please fill in any missing info. Thank you!!!
Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?
All info is voluntary, but it helps us help you and helps us too. When you respond, copy and paste it in your home page for your use and for other members’ reference.
THANK YOU AND KEEP POSTING!!!
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 04/21/2021 5:00 PM DST
"Holy Cosmos Batman, did you see Spyder54's bio? " "I sure did Robin, it's a whopper, one of the best so far. Only he forgot to mention some more details, His ssn, his favorite flavor ice cream, and the name of the first girl he kissed".........(Great job and keep smiling)
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 04/21/2021 9:31 PM DST
Different clinical trial in 2004, but early systemic treatment with a kitchen sink attitude. Last ADT 2010. Still undetectable every quarter since. Keep killing the bastards.
Gourd Dancer
