This past week I’ve heard the word “cure” used twice for the first time in my 9+ year battle with metastatic prostate cancer. Two prominent research oncologists used this word…one of whom is my oncologist at MD Anderson Cancer Center, the other is a colleague in the same department. It’s all about immunotherapy drugs. Watch her webinar by going to this web site and watch the Prostate Cancer section. Stick around for the Q&A.
Summit.cancerresearch.org
To be clear: there is a subset of men in immunotherapy clinical trials today that are having an “amazing, durable response” to the trial drugs. Some with mCRPCa have even come off ADT. The question is, why are these men responding so well?
There is hope, fellow warriors. The “ask” is that all of us that are healthy enough otherwise participate in a clinical trial to help defeat this disease!
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tallguy2
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Hang in there. Just like abiraterone and apalutamide are available world-wide thanks to clinical trials so too will immunotherapy drugs once they are approved.
Geez, Aries29, please try to keep up. Australia is at the leading edge of Prostate Cancer Research and we are right up there in terms of Lutetium treatment. Don’t knock OZ, you are able to get all the leading edge treatments here and very often at minimal cost thanks to our Universal health care system. I am getting Abiraterone, prednisone and Zoladex at $6 per month, all my radiation treatments are free as are my consultations with a top line MO and RO. And no need for private insurance.
Yep I agree Chask, there is a lot to be thankful for in this the lucky country.GenesisCare refused to give me a third LU 177 treatment for reasons best known to themselves at a cost of $10k each,so that was not cheap at all.
I have tried to have the hormone patches also but not allowed in this the lucky over controlled country.
So now on ADT & feel like crap but still alive & thankful to be here with my family still but I wonder if I ever had that third LU 177 would it have cured me?
I have paid my taxes all my working life & been ripped off by every manner of human but havnt we all?
I remain positive & hopeful that one day they will find a cure for this dreadful disease.
Karmaji wrote --- " ...Then how one knows if one is cured or not ... "
I assumed it will be when I am on the autopsy slab and no cancer is found 😀
and --- " ... Patient has to take his health in his own hands and each cancer patient journey is unique... "
In 2015 I chose castration instead of ADT (the boys got in the way of comfortable 100-200 mile bicycle rides)
Instead of seeking out a SOC treatment for GL10, I chose a Mount Everest assault (Hemi cryoablation of right half) then a non-FDA approved trifecta immuno injection (just happens that a combo of 2 of the drugs received FDA approval for PCa last year)
Contrary to standard protocol in 2016 I chose to receive biweekly testosterone injections with T rising to 1,600ng/dL following injection lowering to 400/500ng/dL before next injection.
Only live once and must not fear being dead only fear how it happens. So taking a clue from Old Blue Eyes ---
Right half had GL10 with left containing 6/7. Only right half completely cryo'd leaving left. Have another Axumin Scan in 7 hours due to rising PSA. My last Axumin scan in Jan 2020 followed by a 3TmpMRI scan showed nothing when I had a blip in PSA. After scans it went back down until recently. Just another pothole to contend with so no biking today but looking forward to a 100 miler for Wednesday's FULL MOON. Temperatures will be down so it will be glorious.
I guess without a complete prostate biospy your left with only the needle biopsy indicating the number of cores containing pca. I know patter 4 likes to travel but I'm I haven't read anything about patter 5 but i'm assuming it's a traveler too.
At this time I'm all finished now with my ADT treatments...hoping for a long long remission..
March 2015 biopsy by urologist was a TRUS with only 12 samples showing right and left PCa. Biopsy for treatment a month later and a Saturation Transperineal 3Dimension Prostate MAPPING Biopsy by Dr. Onik with 100+ core samples. Right side full of GL10 with bits of lower in left. He used enough freezing probes in right side HEMI Cryo to ablate an entire prostate for great overlap and to minimize freezing ball size to save nerves and not go beyond capsule. Even after that AND having the original Orchiectomy I could still attain erection and orgasm thanks to nerve sparing. Left side spots were treated 7 months later when the immuno injection also went in. 2018 had the lower GL return in left side being shown on Axumin then another MAPPING with 64 core samples for location and freezing. Right side GL10 was still totally clear. This bump could just be left remaining prostate throwing off some unhappy PSA or a return or even METS in body from circulating GL10 cells. It's a *WHATEVER* so no biggie until the results come in. Back from a PSA and Testosterone draw at MY REQUEST for a 4 hour pre-Axumin base line pair of numbers. Happy that weather is cooler for a few days and should be hitting the road midnight Wednesday looking at 100 miles. 👍👍
Glad your ADT is done and hope things are good forever!!!!
Most look at a glass as being Half Empty or Half Full. I look at it as being Empty and simply requiring an attempt to fill it as I see fit. Thirst helps to motivate me to search for something to quench it and whether it be conversation, water, wine, beer a bicycle ride or ???? it's the filling up that keeps me moving on.
My husband was diagnosed in aug 2018 oligometastatic , 2 mets , one to t12 and a pelvic lymph node , ADT (casodex and zoladex) , radiotherapy to t12 , RRP December 18, 40 R/t to prostate bed and lymph nodes in sept /oct 19. Came off ADT feb 20 and all is good! Psa 0.03 consistently .. Wishing you the same success ..
Similar positive isolated results presented by Tanya Dorff, MD from City of Hope in recent youtube video. Problem as expressed here is the US compassionate use laws which in no way match those in Germany and Australia and the FDA (probably more appropriately called the Federal Delay Agency). The FDA's true area of expertise is delaying release and helping drive drug cost ups. Will be interesting to follow pricing of Lutetium here in the US when it becomes available. I have been told Norvartis target price is $50,000 to $150,000 per dose which would correlate to hospital charges of $100,000 to $300,000 per dose.
Thank you. It is so nice to have you back and looking so good! I have been checking out the European trials and will also try to contact the lady you mentioned. I was particularly interested in the trial you referred to as you mentioned the C word!!!! I practically booked the flights, packed the Bermuda shorts and put the dog in the kennel within the hour! I've calmed down now 😀 but still super interested in these CAR-T trials. Please keep us posted if you hear of any developments. Many thanks, Nicola.
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And again news about clinical trials
How is PSMA PET scan being used in your experience?
Now what? Could use some guidance 
