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Neuroeyndocrine type Prostate cancer? Anyone on The forum diagnosed with this?

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Posted 7/18/2015 8:49 AM (GMT 0)
Drs. Are scratching their heads as what would be next. Line of treatment. Does just anyone on here have their NSE and/or CEA tested?
Husband diagnosed June 2013. (See signature), standard hormone therapies, Casodex, Lupron, Zytiga, chemo (Taxotere/Carboplatin)X6,lowest PSA .5 rise to 7 in Dec.. started Zytiga/Xtanxdi combo along w/3mo. lupron Inj. PSA rise to 14 by May.
Had 2 rounds of Cabitaxil(Jevtana)w/Carboplatin Early June/July. pSA only down to 11, scans show increase in mediastinal lymph Mets and abdomen. New 3-5mm mets in lungs. (although small, not good that they are there at all). Drs. Say Neuroendocrine Type hard to treat. Now in the past two weeks, he has issues with a his left foot. Can not lift big toe and when he walks his foot falls.?? MRI shows no spine mets. neurologist says there is low nerve signal from knee to foot. But does not know what's causing it?...we have had one I Dr. Suggest doing another chemo that is used for neoendocrine Bladder/Gastric cancer. Just wondering if anyone else has had similar diagnosis. Really don't want to be guessing especially with chemo. Sorry for the babble.
Posted 7/18/2015 12:44 PM (GMT 0)
Dear Barb,
Very sorry to hear about your husband. As far as I know, I do not have this variant of Pca but I have heard of it. It is one of the more rarer forms of prostate cancer and from what I understand, does not generally produce large amounts of PSA. I think it is important to find a doctor who specializes in this type of cancer and if you provide information about your general location some of the guys here might be able to help.
Posted 7/18/2015 12:53 PM (GMT 0)
I am sorry to read of your troubles.

This is a trial for neuroendocrine prostate cancer, you might want to read about. I don't know if he would qualify. Good luck.

/clinicaltrials.gov/ct2/show/NCT01799278
Posted 7/18/2015 3:56 PM (GMT 0)
Yes, this is what we've been told also about this strain is low PSA producing. We were told yesterday that normally with his amount of mets it would be in the hundreds. Actually prostate has been normal size since chemo last year. It's the other mets they are having issue with and now lungs.
Thank you for the link to the trial. I will look into it.
Posted 7/18/2015 5:31 PM (GMT 0)
The combination of irinotecan (sometimes etoposide) and cisplatin (sometimes carboplatin) has been used. Taxotere and ADT are used when it's a mixed type.
Posted 7/20/2015 12:17 AM (GMT 0)
This might be interesting, an approved antidepressant that seems to kill some neuroendocrine cancer cells. (neuroendocrine lung cancer article)

med.stanford.edu/news/all-news/2013/09/fda-approved-antidepressant-may-combat-deadly-form-of-lung-cancer-study-finds.html
Posted 9/2/2015 10:10 AM (GMT 0)
Hi everyone! My 75 year old dad, is starting a chemo cocktail of Cisplatin + Etoposide. I hope it helps him with shrinking the neuroendocrine cancer in his lymph nodes. Also, are there any other known treatments after this?
Thanks~
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