Sorry bout delay in response..just got lupron injection puts me in a wierd state for week or so. Ive been in titan trial since my dx. The trial is for erleada.....you can read all about it just google titan trial. The combo lupron / erleada has kept psa undecteble for almost 4 years....it may be starting to fail but ....im still under 2.0 wich is the bad number. Side effects suck....but im one who hasnt done well on adt....muscle loss bone loss.....memory fog is my biggest bitch.....
My PSA was never above 1.2 and gleason 9-10. Prostatic adenocarcinoma with ductal differentiation is what they named my beast. My MSH2 gene is mutated, hereditary lynch syndrome is the culprit for my disease.
Aggressive it is. Before RT began, the damn cancer spread to a muscle in the pelvic area and man o man, was not a fun summer last year. Started with Lupron & Zytiga, then on to Keytruda till March of this year. Cancer became undetectable and today I am off everything, Scans every 3 months...
Your numbers are going the right direction! My advice is don't google ductal - it will just keep you in a dark place. Focus on the today and enjoy the shit out of it!
When we hear of cases where initial PSA was very high, always interesting to learn how/why it was undiagnosed before PSA progressed so high? Was your GP regularly testing your PSA in previous years, and then this sudden jump over a year?
Apparently you had "standard" PCa also, in addition to ductal subtype ?
Shorehousejam started zytiga on July 20. He may still be under the wire to be eligible as per this criteria:
Up to 45 days of CYP17 inhibitor or ARDT exposure for metastatic prostate cancer is allowed prior to ICF signature. No CYP17 inhibitor or ARDT exposure for earlier stages of prostate cancer is allowed.
Sorry, didn’t mean to cryptic. If you’re interested in the PSMAddition trial — and that’s a discussion to be had with your MO — then the maximum # of days you can be taking zytiga (which is a CYP17 inhibitor) is 45 (which assumes I’m paraphrasing the criteria correctly).
If you started zytiga on July 20, then it’s been already about 25-26 days. So, you’d have to get your MO onboard and move things forward quickly to still qualify, since getting into these trials have some lead time with paperwork, etc.
All of that assume this is a good trial for your situation, your MO is supportive, you are willing, etc. Again, that’s b/w you and your MO.
All of this said, now that I look at your profile and review PSMAddition’s criteria, it might be that your use of chemotherapy makes you ineligible for that trial. But, again, I’m not anything remotely close to an expert; please rely on your MO for insight here.
I’ve not done Lu177; I assume it’s an infusion/injection but really can’t speak to specifics. Whether it’s more effective than chemo against tumors (or ftm whether it’s not a good idea at all) depends, I would think, on the individual case.
There are many threads on this forum about Lu177/Pluvicto to get you more informed, and even more information on the web. Regardless, you’ll want to discuss this with your MO.
As far as I know ductal often implies MSH2 mutation, possible a very high TMB. Then a checkpoint inhibitor can be very effective, Pembrolizimumab.
I had a few ductal elements on my biopsy and my PSA was only 2.9 at diagnosis. PSA undetectable 4 years after RP. Then slow return. No Mets on PSMA. Just got RT, Lupron and abiraterone. The abiraterone was added in part because of the ductal elements.
Well, you are diagnosed and on an excellent triplet treatment right out of the gate with an excellent PSA response. So perhaps that is worth being happy about?And you have more weapons going forward with the BRCA mutation. Do you have further biopsy tissue for further IHC analysis? May be a good responder to PARP or checkpoint inhibitor.
Your PSA is high enough for PSMA scan to evaluate avidity and possibly other sites, and could predict a good response to Pluvicto or similar Lu177 treatments abroad where they will treat while still hormone sensitive.
In the meantime try to not let PC overshadow your one amazing life.
Much the same history. The specialist who did the biopsy told me I've got tubular prostate cancer. Fast aggressive, gave me a max of 5 years.My PSA was also just over 900 after the biopsy. Started on Lucrin. And started a second line treatment: the malaria tablet Coartem.
Now in year 7. At the moment floating on 50 mg Casdex and 10 mg Kessar a day. Take regularly drug holidays for 4 months, just drink a lot of cayenne capsules and tomato paste. PSA floats between 0.04 and 0.4 when I take a drug holiday.
My husband has a combination of acinar and ductal type. You can see the details in my bio. Had RP April 2021. Pathology indicated spread to one lymph node.
He is currently not on any treatment per MO and RO recommendations. I'm not comfortable with that, but my husband is happy not to be on anything. It is very disconcerting that they depend on PSA when this particular cancer doesn't express PSA. The RO told us that when his PSA gets to a .1 or .2 to come see him and he will probably do a PSMA scan.
Absolutely scary, with advances in medical treatment, at this age of the game, we all shouldn’t have to “ wish” for better treatments or have to push or challenge medical oncologist to take it more seriously, as this ductal subtype is more progressive as well as aggressive. The treatment options seems to be chasing the cancer, if spread to the bone and organs causing widespread damage.It seems treatment is oriented after it had spread instead of being preemptive. Our medical oncologist (s) are treating it with triplicate therapy, presently with added chemotherapy plus we will insist on radical prostatectomy and then radiation to prostate bed….It’s all so confusing, apex, base, ducts and seminal vessels.
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