Terminal advanced prostate cancer

[Artlenoc11]

Hi ! I'm new to all this. I am 57, I have terminal advanced prostate cancer, Gleeson 10 ( the most aggressive form ), it has spread to my shoulder blade, ribs, pelvis, lymph nodes. I've had chemo ( Docetaxel ) and unfortunately the cancer has "morphed" and now doesn't give out PSA, so blood tests are now irrelevant. I have regular 3 month scans to compare the spread of the disease, and am now on second line hormone treatment ( Abiraterone ). Anyone out there of my age in a similar situation ??

[Tall_Allen]

Morphed into what? Have any of the recent mets been biopsied? Are the bone mets lytic? Is it responding to abiraterone? If you have mixed type neuroendocrine PC, here are some suggestions:

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

[Fairwind]

MANY of us are in a similar situation. You (and I) have terminal cancer. We know where we stand. What was your PSA at Diagnosis and what is it now ?? The Zytiga can produce a dramatic remission.. If your PC has mutated into a form that produces little PSA, check and see if you have a gene structure that might respond to one of the new immunotherapy treatments coming online..Maybe look into a Lu-177 trial, or BAT..Time to start thinking outside the box. Remember, Trump signed the "Right To Try" Bill into law..If you find something you would like to try, use it ! Make waves ! I mean, we don't have anything to lose..Most of the medical professionals just don't get that...

[William123Cooper123 in reply to Fairwind]

All the new therapies are wonderful... the big BUT:

• Most are very expensive.

• Most are not covered by insurance.

(Too often we learn of someone going into debt to pay for a therapy that adds only limited survival ... leaving them in a very bad financial situation, or their spouses without satisfactory financial resources as a caregiver-survivor.

[Lombardi24 in reply to Fairwind]

My oncologist said that even though trump signed it I still cant get drugs in trial because theres too much paper work and hierarchy to go through so I would most likely never get it

[Kimmilemo in reply to Lombardi24]

Contact your local congressman they should be able to help you.

[Lombardi24 in reply to Kimmilemo]

Thank you.

[Scruffybut1]

Who determined it's Terminal? Usual DX at Stage 4 is Incurable. But treatable.

[j-o-h-n]

to Artlenoc11: Greetings...Sorry to hear about your condition. You've come to the right place for helpful information. The guys (and gals) here are great. Listen to their recommendations and advice. Tell us where you're located and where you are being treated.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/22/2018 12:27 PM EST

[paulofaus]

I'm in the same boat, age 51. My cancer morphed into small-cell. Watch the terminal word, if you say it, you'll become it. I like to (as suggested by Scruffybutt) use incurable. I've had Cisplatin/Etoposide/Cyberknife. I'm soon to move over to Cabazetaxel as I've had some progression to a new site (lymph nodes in my chest).