I am grateful to all the people who posted their stories and something positive that I could hang on to. You supported me a lot by sharing those stories! My dad was diagnosed with metastatic prostate cancer in May 2017 and currently undergoing ADT (both daily Casodex and Zoladex injection every three months) in addition to X-Geja every four weeks. PSA is dropping but not rapidly.
I am curious to know about others who followed the same course of treatment, and thank you again! 
Hello NG17! Could you please share a bit more on your dads condition? The more details you can share the better. For example, I was diagnosed in January 2016 with advanced Ductal Prostate Cancer (very rare and hard to treat), Stage 4D1, T3N1 that had spread to the pelvic lymph nodes. Had surgery in February 2016, started Lupron in June 2016, 38 rounds of radiation that ended October 2016, and started Zytiga on top of Lupron June 2017. They follow my cancer with scans as at least 30% of it does not produce PSA.
Please know that this site is just as much for the caregivers as the men fighting cancer. In fact, I believe that it is harder on the caregivers. Lucky there are a lot of caregivers here. Please feel free to post about how your dads cancer is effecting you.
Thanks so much, this group is indeed a great support for cargivers like me who need every bit of positivity they can find. My dad's cancer was discovered late when it blocked both ureters. We managed to operate an open up one side while the other remains blocked. Bone scan was done and showed a few spots, and lymph nodes are also involved in pelvic area. That's as much as I can figure from all the medical jargon.
Thank you again for taking the time to support individuals like me who live miles and miles away and find comfort in positive stories.
Good luck everyone and keep beating cancer!
Thank you for the information. Based on the above it looks like the cancer can not be "cured" but managed, which is one definition of advanced cancer. While that sounds bad, please know that there are a lot of people that have been here for over a decade with advanced cancer. St this point it may be better to treat it like a chronic disease (and I hope to be able to say that eight years from now). Overall your dads treatment appears to be sound. You have to still keep up with it, you may want to get a second opinion, but there is no reason not to enjoy life.
Sounds like your father is getting a fairly standard treatment for advanced prostate cancer. You said the PSA is dropping, but not rapidly. Could you share the details of that with us such as PSA at diagnosis, current PSA, etc.? Two important things about PSA are the nadir (lowest point of the PSA) and also the time to nadir from diagnosis. The PSA at diagnosis is less important.
A lot of us here have also had early chemotherapy along with ADT based on two recent trials (STAMPEDE and CHAARTED). Having early chemo showed an additional survival benefit of 13 months. The STAMPEDE and LATITUDE trials more recently showed a similar benefit for the early use of Zytiga.
If he was diagnosed in May, it's not too late to get the potential benefit of adding one of these two treatments to ADT.
Thank you for taking the time to reply! At diagnosis, PSA was more than 150. Then hormone deprivation therapy started in May (Casodex +Zoladex) and PSA went down to reach 40 in July which was the lowest we saw. Latest PSA is 53. Medical team is suggesting a biopsy as we did not do one yet due to being on coagulants after open heart 9 years ago. I hope he can tolerate second line treatments and that he responds again..
I agree with your medical team because of the response to ADT. Biopsy is a good idea at this point to find out what the cancer looks like and what treatments will be most likely to work going forward. From the response he had from ADT, it's possible that his cancer has some cells with neuroendocrine (small cell) characteristics or possibly an AR mutation of some kind like ARV-7 for example. I would want to know that before moving right into second line ADT which may not work.
Do you know where the mets are?
Bone mets and lymph nodes in pelvic area. That's what we know. We did not do a PET scan.
That's definitely better than mets to organs. Did they say specifically what they would look for in the biopsy?
No, can u advise me on what they should be looking for so I can follow up?
I'm not a doctor, but from what I know you can have neuroendocrine type cells in the cancer that do not have androgen receptors and that would give you a poor response to Androgen Deprivation Therapy. A PSA nadir if 40 along with a time to nadir of 2-3 months is considered a poor response. In my opinion, you would want to find out why so you are not just guessing at which treatments to try. In a biopsy you would be looking at the cells for these neuroendocrine characteristics that are not responsive to ADT.
There are also what are called "liquid biopsies" which are based on the blood. In those, you are primarily looking for mutations in DNA repair such as BRCA 1 and 2 which allow for the use of PARP inhibitors. Here's an article:
nejm.org/doi/full/10.1056/N...
There are mutations possible in the androgen receptor like ARV-7. There are also markers for neuroendocrine cells such as Chromogranin A.
Run all this by the doctors and feel free to add or correct anything I've written here. I am trying to learn more so please let us know what they say.
Here's an article on the general subject of "AR indifferent" prostate cancer which is the broader category of prostate cancers that don't respond to AR-based treatments.
Hi NG17,
I have been on Zoladex for slightly less than 4 years now, when I wasdiagnosed at the age of 64. I am also on Abiraterone and I have been treated with Radium 223.
My quality of life is excellent. I am physically very fit, not too much overweight and live life to the full.
My PSA was initially 620, then dropped to 0.02 and is now about 19. Of course it is a frightening and unwelcome diagnosis, but for most of us modern treatment is excellent.
I have had no surgery as my metastases are widespread in my skeletal system. Everybody is different, but my route has been virtually NO dairy, Red meat only as an occasional treat, otherwise fish and chicken, Lots and lots and lots and lots of fresh fruit and vegetables, a daily moderate amount of nuts and if possible wholegrain rice, pasta and bread.
I am not a doctor, but I believe it is nowadays considered important to combine Abiraterone with the Zoladex. Always get your Dad to discuss fully with his consultant and trust his advice, if he has confidence in him/her.
Best wishes,
Niall
Thank you so much for taking the time! I wonder how long did it take for PSA to drop to undetectable on Zoladex alone? I am hoping that there is a delayed response in my dad's case. Radium 223 is not available in Egypt where I live. And Abiraterone is it the same as Zytiga? We still don't know what will be next. Awaiting a biopsy to determine course of new treatment.
Thanks for the diet tips! Much appreciated and I wish you full recovery.
Yes Abiraterone is the same as Zytiga. Zytiga is a trade name.
When to introduce ADT after RP failure
Christmas present to myself
When is PARP introduced?
Killing myself while trying to save my life.
VERY limited exercise… am I kidding myself
