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

[paulofaus]

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

[Tall_Allen]

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 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 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 in reply to Tall_Allen]

Thanks Allen, very much appreciated.

[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.

[MelaniePaul]

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

[paulofaus in reply to MelaniePaul]

Thanks Melanie.

[DenDoc]

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 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.

[Dalph87]

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.

[paulofaus]

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.

[Hotrod65]

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

[dasyluo]

Hi Paulofuas,

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

[dasyluo]

Sorry to hear of that.