Has anyone ever had experience of PSA going down with mets spreading? My dad has had to have a 2nd blood transfusion within a month of the first one, but onco said its not the prostate cancer its something else because PSA gone down.
Can anyone give any suggestions?
Hi,
I know that hormone therapy can cause anemia?
Do you have more info? What treatment is he on now and what are his psa and alp results do you know?
Karen,
I am not a physician but to give you a reasoned, layman's perspective: Please provide more detail on your father's personal PCa profile and, if he is taking any vitamins or supplements of any type, please list those. Also, is he a vegan/vegetarian? How is his diet/appetite overall? Any food categories he prefers to avoid? Is he receptive to big salads, lots of greens and veggies? Has he been trying any naturopathic remedies? What OTC medications does he take regularly?
Thank you and good luck.
I'm not knowledgeable about this but I think that there is an aggressive form of prostate cancer called "neuroendocrine prostate cancer" (NEPC) in which PSA levels are quite low. The incidence of neuroendocrine forms of cancer has been increasing lately because of the success of advanced treatments like Zytiga, Xtandi, and chemotherapy. It seems that cancer keeps evolving and the more and longer you hold it down the more resistant it becomes to treatment. If your Dad has been on the advanced ADT drugs for a while this could be a possibility.
There are tests for NEPC and maybe your Dad's onco should order them. I think it requires a sample of the tumor cells, examined under a microscope. The doc may already know that it's not NEPC or have a good reason for believing that it's not. But If he hasn't got a good reason for not considering this, it might be worth getting a second opinion. Since NEPC has only recently been recognized, you might do best to go to a teaching and research hospital for a consultation. See: cancer.gov/research/nci-rol...
There are experimental treatments for NEPC. They include olaparib and a number of similar drugs, and platinum based chemotherapies like cisplatin and carboplatin. A doctor might try to find out if these therapies help without doing the test. I just don't know enough to know if that's a good idea.
NEPC is very serious and men don't survive for very long with it.
Here's an article from the National Cancer Institute about NEPC:
cancer.gov/news-events/canc...
It's technical but informative.
I hope that your Dad doesn't have NEPC and I wish you both the best of luck.
Alan
Alan,
that is what I think...the push to combine ADT with Xtandi or Zytiga is wrong if the cancer can be controlled with Lupron monotherapy
Gus
If I understand the results of the clinical trials of combination therapies (see Tall_Allen's explanations of them in his postings here and on his blog) the combination therapies, Lupron + Zytiga or Lupron + docetaxel, are effective for aggressive cancers but not for less aggressive cases. If that's true, then if you had a high Gleason score and/or rapid PSA doubling time, you can benefit from taking Lupron + (Zytiga or docetaxel or maybe Xtandi) even though Lupron alone is still working for you. Most such patients will live longer if they take the combination than if they take Lupron until it stops working and then add another treatment.
However, if the cancer is less aggressive, the patient gets no benefit from combination therapy. He gets the additional side effects but not longer life than if he waits until Lupron fails to try something else.
So I guess what I'm saying here is that I mostly agree with your statement but add the qualification that if the cancer is aggressive, don't wait for the Lupron to fail to add more treatment.
Alan
Hi Alan, it seems that may be the case. He had CT scan on Tues and appt with ONCO today. He has mets everywhere, except bladder. Im shocked, devastated and just so confused. Thanks for your input. I appreciate it a lot. x
PSA at 0.285
Psa
Psa down on no intervention 
rising psa
PSA rise
