On our way to Germany for Hyperthermia & high dose ADT (plus mistletoe, ozone, light & magnetic therapy).
Just met with UCSF doc & Mets in hip bones + lymph’s growing. BRCA2+
Plan when we return is Lupron (3 mo Depot) plus Zytiga/prednisone.
Question: Chomogranin A (138) & LDH (227) are both raised and pointing to Neuroendocrine pCa.
Will ADT therapies just anger this giant and help the NES type take off?
Did they do an immunohistochemical (IHC) analysis of any of your mets to get a diagnosis of NEPC? If so, was it positive for somatostatin? If so, you may respond to Lutathera or 213Bi-DOTATOC (available only in Heidelberg, as far as I know). The IHC will also report the presence of PD-L1, which may make it vulnerable to Keytruda.
Most men who have NEPC have a mixed type - so some of the mets will be responsive to ADT and docetaxel.
pcnrv.blogspot.com/2016/12/...
The test results are still coming in. Our next appointment is June 10 to discuss but we already had this trip to German Klinik on the books. Just wanted verication we weren’t causing more bad then good.
Thanks for all the wisdom. These are questions we need to ask our doctor.
They are also doing LU-177 in Germany in case you didn't already know. You need to have good PSMA expression and unfortunately, NEPC doesn't express the PSMA. But like TA said, not all the cancer is NEPC so you might have enough. Also, Carboplatin chemotherapy can be effective with NEPC, sometimes used along with Docetaxel. Things to discuss with your doctor.
Great information. I’ve been watching the LU-177 and it looks promising. Still trying to stay away from zchemo as we haven’t seen much long term success.
In some cases like mine, not even short term success. Complete and total failure with no upsides, only downsides (chemo).
The 177-Lu-Dotatate therapy for neuroendocrine tumors is offered at several clinics in Germany, e.g. Bad Berka (Prof. Baum), Homburg/Saar (Prof. Ezziddin) and Munich (Prof. Scheidhauer).
I've read far too much about these 'clinics'. You might want to read this before blowing $30,000 a visit. It's your choice though....
sciencebasedmedicine.org/th...
A sobering article but there is no data on survival for the various clinics or their treatments. I guess the clinics won't release this data. It would be good if legislation forced clinics to publish audited data.
That's what I thought of when I heard "light and magnetic therapy". Buyer beware.
Thank you for sharing. We have done many alternative therapies for over 2 1/2 years including a week at German Klinik. We don’t plan on “curing” cancer with them. But it has bought us both quality and quantity! Almost 3 years with absolutely no side effects. We started out saying we can always add conventional therapies when absolutely needed. We are at that point. But in the mean time, we learned exactly what kind of version of this beast we are dealing with. BRCA2+ & NES don’t respond well to much that is offered in our country until “castrate resistant”. Then we will get access to Keytruda or PARP. We have tried and been denied.
Most the times the doctors and clinics can’t release information because they become targets. We were doing some great Epigenetic treatments in So Cal for last 7 months with success. The doc stays quiet & below radar as he spends most his time on research & development of what will be standard care in the future. He’s working on FDA approval but that could take 10 years +. He just lost his “supplies”. Every year he loses them for about 3-6 months and has to find a new provider. This really hurts his patients and his progress. There are politics and big pharma that may or may not play a roll? The article you posted talks about them using viruses (Rigvir) or immunotherapies. All known to work well with some people and NOT at all for others. Just like chemo!
Most people that go to these clinics go at “end stage” when on the way out the door. So the clinics don’t save them any more than a hospital does at that point. It just provides a positive place to live with hope instead of fear before they pass. And the feeling like EVERYONE DID EVERYTHING POSSIBLE before they died. Us humans need both of those things, we are funny this way 
"strange" not "funny".... Funny is when your ex-wife marries an axe murderer.
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 05/13/2019 6:56 PM DST
Get a bone density test if you have PC and are taking Abiraterone etc
Duration of ADT
Allergic to Docetaxel......other treatment options alongside ADT
Skip the injection, go straight to abiraterone
Heading to India
