Treatment Center Options - Aggressive Prostate Cancer

Posted by martial1 @martial1, Sep 24 11:16am

Hello - my BIL (61) had his first PSA done a couple of months ago with a 7.1 result. MRI and biopsies showed Gleason 9 with PNI and swollen pelvic lymph node. PSMA CT scheduled for next week. Urologic oncologist said very bad cancer. Can anyone recommend a treatment center that may be better than your standard local oncology team - Mayo Clinic? MD Anderson? Johns Hopkins? Thanks

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@richiec
Are you referring to Provenge? That’s really the only Monoclonal antibody Available for prostate cancer itself, Unless you are involved in a clinical study. When you have Proveng it does not lower your PSA. It’s something you should have when your PSA is low and it will hopefully prevent the cancer from getting worse. Unfortunately it isn’t such a panacea.

Provenge extends survival for men with advanced, asymptomatic or minimally symptomatic metastatic castration-resistant prostate cancer (mCRPC), with an average survival benefit of 4.1 months in clinical trials compared to placebo.

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@jeffmarc I am approx approx 5 months dx with prostate cancer gleason 7 3+4 and 1 biopsy 4+3 woth cribiform glands. After doing my own thorough research was able to get in a trial at Memorial Sloan Kettering for a monoclonal antibody treatment started 9/23 along with ADT started 9/2 . So far so good. Monoclonals are the way to go when it cones to killing cancer.

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@richiec

For some reason, I missed the word “trial” and I’m wondering, which one you are involved in.

Are you referring to the trial with 2141-V11 an immune-activating CD40-targeting antibody, for high-risk localized disease. Mentioned by @dailyeffort

Or another study they are doing is with the PSMA targeting antibody MLN2704.

Is the one you are involved with even different from those?

Is it possible you could get a placebo in this trial, That’s one reason I’ve avoided trials, and fortunately, I have not needed one yet

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@dailyeffort Wow…not such a ‘simple’ alternative after all, Bill. Involves the experimental protocol PLUS all the available standard therapies!
No magic bullet yet…thanks for the article,
Phil

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My husband got diagnosed with stage 4 in February, PSA was 285! then referral to urologist, first CT scan which showed it outside prostate so that put it at "advanced"/ stage 4... Urologist referred to oncologist at UNC (we're in NC and UNC is close) UNC is a teaching hospital too so we figured they're open and know the latest, plus DUKE is near it and they "talk" I'm sure, the oncologist we picked came recommended by a friend.
First the urologist did a biopsy and Gleason scores came back mostly 8 and 9s, a few 7s...so again very aggressive.
Finally we saw the oncologist, who was very "by the book" and urologist had "warned" us that oncologist would want my husband to be medically castrated (take ADT) and at first he refused! He's rather die than mess with his manhood! since it was outside the prostate, surgery was not an option, the first visit was terrifying! Lots of people talking to us, also radiologist about stuff later on down the road.
First the oncologist scheduled a PSMA PET scan and we got the results on "my chart" app before seeing the oncologist again and it was horrible, the cancer was everywhere! we knew from the pelvic CT scan that it was in lymph nodes near the prostate, but the PET scan showed innumerable focci in lungs, stuff in spine, lymph nodes near the lungs, pelvis, bones and I can't remember what else!
of course dr Google gave us more answers before we went back, with stage 4 prostate cancer, 35% make it 5 years WITH treatment!!
My husband was still reluctant and I pleaded with him and was angry. That if I got breast cancer like that I'd cut them off and it wouldn't make me less of a woman, right??
He finally did it! First it was Firmagon which is a monthly shot and unlike Lupron it lowers the PSA right away, (Lupron can make it spike before lowering and there's some anger issues as side effects too)
He was supposed to take Zytiga too, but in those weeks or few months when it all started, my husband was desperate and took any supplement he could find out there! and it wrecked his liver! (at least the blood test showed it, to the point of them calling and saying he was in liver failure, but he felt fine and looked fine etc, but it scared him and he quit everything, of course he had to get an ultrasound of the liver which was normal and also talk to an organ specialist who pinpointed which supplement might have caused it, though probably all of them together) finally his liver got normal again and he started daily zytiga pills and prednisone and...... the 3rd part of it was chemo, which he didn't want to do either but finally relented and he just finished 6 doses of docetaxel a few weeks ago.
He's doing "extremely well" and doesn't look sick, eats right, exercises (which I've read is KEY!!) and he'd going back for another PSMA PET scan in 2 weeks!
At the last appointment we asked if it all is even working because he IS doing so well, this pharmacist lady who's often there, replied that it IS working or he'd be dead by now!
We'll see what the next step is, but so far he'll take his daily pills and monthly Frimagon injections- they highly encourage him to switch to Lupron but he doesn't want to... his PSA is maybe 2 or 1.5 now? I don't remember but within the "normal" level but that doesn't mean anything anymore, now it's a matter of how low it can go and they expect it to be castration resistant in 18 months or so and then switch gears. (I'm guessing Pluvicto) we'll see
It does seem like research is rapidly advancing medicines for PC... because most men die with it (may or may not be diagnosed) and it's common like breast cancer is!
My husband is now praying for us to at least have sex again, but we'll see.....

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@gemini27
If you’re willing to go to Houston, you would be better off seeing

Dr. Efstathiou is the best GU MO in the region, even though she's at Houston Methodist.

I know a lot of people that have Used her as their main oncologist and are extremely pleased with her. She really knows what she’s doing. She Will spend a lot of time with you and explain things in English you can understand..

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@jeffmarc thank you

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