My bio says it all. Some bad luck recently. I failed what may be the hottest immunotherapy therapy trial in the world (the “BiTE protocol) but then again half the men on the trial see no benefit and the scientists don’t know why, yet. If anything I and a fellow patient feel like the immunotherapy drugs supercharged our prostate cancer!
Before I could start my next trial drug, which involves an “anti-trop” drug, I was told that an MRI showed two small brain tumors. These were treated last week with “gamma knife,” a trial requirement. I also had my bladder irradiated (palliative care). So my new trial has been delayed since mid-March and my PSA doubling time is 3 weeks. With prostate cancer growing in the lungs and liver, too,
My question: I was given a choice between starting this new trial and starting Jevtana/carboplatin. My new trial oncologist says that the trial drug has been shown to cross the blood-brain barrier whereas Jevtana/carboplatin doesn’t do so well. The BiTE trial oncologist recommended the chemotherapy.
So I chose to wait and start the trial drug next week. What would you have done if you were in my shoes?
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tallguy2
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I have also participated in several "promising" trials, even waiting almost 2 agonizing months for one to start, none of which were effective for me and each resulted in higher PSA levels than when I started.
I don't regret participating in these trials, and hope that more of us would consider such. How else will viable treatments be found.
At this point I decided on SOC Jevtana/Carboplatin combo. Have had treatment #5 last week, and scans two days later. PSA down 90 percent. Expect scan results shortly. Side effects tolerable, and I still have my hair.
Like you, I have no regrets in participating in these clinical trials. I hope to live long enough to get some answers. If the third time isn’t a charm I will likely join you with the chemo combo.Best wishes!
Brain tissue involvement is very rare. I hope the new chemo is able to shrink it. Do you know what it is?
I know they ended the trial for one of the BiTEs (Harpoon 424) because it didn't work. But that leaves 9 BiTEs targeted at PSMA, plus others targeted at STEAP1 and hK2 - hopefully, at least one of them will work.
I was worried that in patients who have "discordant" PSMA-avidity (some of the cancer expresses lots of PSMA while some expresses none). I raised my concern about PSMA-targeted BiTEs with Tanya Dorff. She said that with immunotherapy there is a phenomenon called "antigen spreading" - the T-cells learn to attack antigens of the cancer other than the one to which they were first targeted. I hope she's right (she usually is).
I saw data on my BiTE trial at MD Anderson that showed some men having an amazing, durable response. Not me. Much of my PCa does not express PSMA.
The new drug is called DS-1062a. A Phase I trial with a drug that is being tried for multiple types of cancer (the GU oncology department booted me out…). Trial number NCT03401385The drug is going after “TROP-2 biomarkers.”
I know the trial only talks about lung cancer. They have created a small cohort of advanced prostate cancer patients.
Thanks. Interesting! I actually invented a new type of trophoblast-related disease for my novel "Thaw's Hammer." Trophoblasts cells surround the fertilized egg in placental mammals and prevent the immune system from attacking it. It makes sense that inhibiting them would allow the immune system to attack tumors. I hope it works!
I need to buy your book!Yes it would be good to see a positive response and to see a reduction in tumor size on scans. Including progression on abiraterone I have seen nothing but progression for almost a year. I had no visceral mets until February. It can be discouraging. I focus on what I can still do and I am asymptomatic. Yet I am running out of options.
I’ve sort of done the reverse. Just finished 7 Carbo plus Jevtana infusions and now in a CAR-T trial.Each chemo infusion knocked my PSA and bone sensations down for a couple of weeks but it all starts coming back in time for the next infusion. So useful but not durable for me.
not meaning to interfere or preach so please forgive me if I am intruding
Enquiring/researching about a protocol only increases one's knowledge regarding treatment possibilities. Have you "simply looked into" what might be available from Dr. Gary Onik in Ft. Lauderdale, FL for "YOUR SPECIFIC SITUATION"
GOOD LUCK
Dr. George Sheehan, Cardiologist + Author *r.e. his PCa Journey and life* + Elite Running Athlete who died from his PCa just 4 days short of his 75th Birthday penned what I believe to be some meaningful words for all ---
“We are each an experiment of one.
A unique, never-to-be repeated event.”
and
“Don't be concerned if running or exercise will add years to your life, be concerned with adding life to your years.”
I have not looked into your reference from FL, sorry. What’s your experience with him?I can no longer run or bike but I am a lap swimmer for cardio. It helps a lot.
2015 just minutes before my agreed treatment was to be performed Dr. Onik offered an immunotherapy injection of his design used successfully but strictly an experimental procedure with absolutely no guarantee. I accepted and since that time he has improved upon the base and has treated many individuals with mets. A search of Dr. Gary Onik will yield info that you might find helpful or not.
Just read your Bio. Quite the journey! You seem to have a great attitude about all the goings on. I hope you have great success with your next treatment. And thanks for doing these trials!
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Cancer immunotherapy 
Jevtana, Carboplatin, and fasting
Starting Chemo & Immunotherapy this week
