My cancer has morphed to treatment-em... - Advanced Prostate...

Advanced Prostate Cancer

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My cancer has morphed to treatment-emergent small-cell neuroendocrine prostate cancer.

paulofaus profile image

Hi Guys,

I had a TURP in July and the pathology report came back that my prostate cancer cells were small-cell neuroendocrine type, while my original diagnosis was adenocarcinoma Gleason 10.

The cancer has grown up the side of my bladder, which has caused a bladder bleed which needed a repair under general anaesthetic.

I've recently been through 5 fractions of Cyberknife treatment (maybe more to follow) and my medical oncologist has put me on a new chemo regime of cisplatin and etoposide, hoping to get some local control. I have completed the first of four rounds. It's knocked me around, but has not been as bad a docetaxel.

I am interested to hear of anyone else who has been down this path.

I have had the same number of bone mets (about 10) since diagnosis 2.5 years ago.

Some of my bone mets have progressed, so I got spot radiation which worked well, but this growth into my bladder is new and likely due to the small cell cancer behaving badly.

Thanks in advance.

Paul

14 Replies

Here's some info on trials of new treatments for small cell PC. A recent report found the mixed type that you have in 17% of heavily pre-treated patients.

pcnrv.blogspot.com/2016/12/...

If you can afford it, consider going to Heidelberg for experimental treatment. They may be able to administer a combination of Bi-213-DOTATOC and Ac-225-PSMA that might help with both.

paulofaus profile image
paulofaus in reply to Tall_Allen

Thanks Allen, very much appreciated. I was looking into a Lu177 trial, which works against PSMA avid cancer cells and I'm sure I still have theses. Ac-225 sounds more severe as it can destroy salivary glands, but that beats being dead.

Tall_Allen profile image
Tall_Allen in reply to paulofaus

Lu-177-PSMA also attacks salivary glands, but they recover in a few weeks. I think Ac-225/ Bi-213 (alpha emitters) may turn out to be more effective than Lu-177 (beta emitter).

paulofaus profile image
paulofaus in reply to Tall_Allen

Thanks Allen, very much appreciated.

lewicki profile image
lewicki in reply to Tall_Allen

Had four treatments LU-177 and AC-225 at University of Heidelberg. Last treatment July 2020. Dry mouth is slowly getting better. When that happens I will loose my excuse to have to have a Budweiser with dinner to wash down the food.

Ah I am so sorry to hear this. And I wish you strength for the new treatment regime.

Thanks Melanie.

Paul,

My story is similar in that my cancer has morphed into a small cell type. I have just finished 4 months of Carboplatin and Etoposide. I am now on a treatment holiday awaiting my bone marrow recovery. All my mets are soft tissue in the pleura of my left lung and I have a catheter to drain the effusion.

My profile contains a summary. I was that Gleason 6 guy 22 years ago who some may not have treated.

I am enjoying my time off treatment which has allowed me to enjoy family, travel, exercise and life in general.

Next treatment will be Opalarib, a PARP inhibitor based on the genetics of my tumor.

Bob

paulofaus profile image
paulofaus in reply to DenDoc

Hey Bob, Great to hear from you. I had a somatic genetic test recently (before radiation) and they may recommend a similar course of action based on the genetic defects they find. So there is no truth in the low Gleason score being 'indolent'. It seems even though it's been a long road, your condition has progressed quite a lot. I'd love to get 22 years as I was 49 at diagnosis and I'm still only 51 with a young family. Thanks very much for sharing your story with me. Interesting you got Carboplatin/Etopiside and I got Cisplaton/Etoposide. Cheers Paul.

Sorry to hear that, Paul. Are you still taking Enzalutamide by any chance? Just curious to see if your MO wants to continue with the drug and\or consider a switch to Abiraterone in future. Good luck with Lu177 and let us know how it goes.

Best wishes.

Hi Dalph, yes, still taking Enzalutamide. It seems to still be working well for me after 9 months, fingers crossed that continues. I guess Abiraterone is in my future, but it depends whether I have a combination of small cell and adenocarcinoma or all small cell. I may be looking at Oliparib as part of a clinical trial based on the results of a somatic genetic test I had recently also. Thanks for checking in on me.

Genomic Sequencing of my tumor Pathology scNEPC, matched me to checkpoint inhibitors Blockade immunotheraphy, 4 yrs 47 infusions.. currently complete durable Clinical Remission NED.

Hi Paulofuas,

It has been 2 years, how are you doing now with the treatment

Sorry to hear of that.

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