Advice needed

FormerMember
FormerMember
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Hi all

I need a bit of advice I am 46 and been diagnosed in October 2020  with stage 4 PC with a PSA of 198 and Gleason 4+4 my oncologist advised me that I only have 4 years to live as it has spread into my bones my back and my liver. They gave me hormone injections there and then and said I will be getting high doses of chemotherapy which I am agents having now this is where it gets interesting since November I started an alkaline diet and taking CBD oil  I had my second hormone injection about two weeks ago but my point is I went yesterday to pick up my xtandi tablets but while I was there I asked if they had my latest blood test results well then I got told my PSA is now (14) down from 198 now my question is do I take these tablets with lots of risks and side effects or just keep doing what I have been doing .also I had mentioned to my oncologist about alternative treatments BUT got shot down his reply was you won't even be offered alternative treatment unless you have chemotherapy 

Has anyone had any experience like this 

  • Hi BS and welcome

    Tricky one this,  first thing though,  wrong for the oncologist to give you a timescale, I have always thought that once u get something like that into your mind, well, its a self fulfilling prophecy. Great news that your PSA is down to 14, something is working.

    I have read good things about CBD oil but have also read good things about the latest Chemo treatments.

    Just my opinion but I would carry on as you are, having the HT, Chemo and using CBD oil with diet changes (alkaline etc)..

    With PC that has spread to bones and liver its probably worth throwing everything at it.

    See what others think.

    best wishes

    Steve

  • I agree that no oncologist should pass on his best guess (that's what it is). On the other hand, stage four with spread to bones and liver is a pretty advanced disease.

    The point of the hormones and the chemo is to slow down the disease; no, there's no guarantees, and yes, they have side effects. It's your choice whether to take them or not, of course. But without the treatment, the disease will obviously advance more quickly. Clearly the hormones are having an effect if your PSA has dropped so far after a couple of months.

    You could certainly try alternative treatments, but none have any evidence to support their use. None.

    Not an easy decision to take, and I wish you all the best. If I were in your shoes, I honestly can't imagine what I'd do.

    Best wishes.

    - - -

    Heinous

    If I can't beat this, I'm going for the draw.

    Meanwhile, my priority is to live while I have the option.

  • Hi 

    As Grundy has said, no one puts a time scale on PC, as it’s so slow to grow and there’s new drugs coming on the market all the time. My PSA was 893 and dropped to 0.07 after chemo therapy ( docetaxel) it stayed that way for for for and a half years, just started going up to 5.3 but I was put on Xtandi  was not for me to many side effects that worried them I’am 68. But many others do well on it, also radiotherapy helps shrink the prostate all this is a fight, your just starting out, was it the top person at the clinic/hospital that gave you this information ? We’re not doctors on here but help where we can we’ve been through a lot of this. It’s good your PSA is dropping it’s reacting to the hormone drugs, have you had many scans ? Mines in my bones as well ( not my liver ) being young it is a devil getting this you will feel angry and why me, but whenever you see the oncologist again make sure you have questions write them down, also if your like me ask what’s the plan B if what there doing is not working.

    Stay safe

    Joe