In September last year my PSA was 0.06. Three months later PSA was 0.09. I asked my doctor if xtandi was failing. He told me not necessarily, once your PSA reached its lowest point, it tends to go up and down before it settles down. He told me they would check my PSA in six weeks, six weeks later PSA was still 0.09. I get my PSA checked next week. Any thoughts on this.
ET
my psa test only goes down to <0.1 . Oncologist says it’s all he needs.
You have nothing to worry about and although I truly wish you the best, it depresses me to see posts in this forum by men who never had and still do not have advanced prostate cancer. Probably because I feel like I am very advanced and only months away from the end.
I had a PSMA scan done in June 2021, had 2 LN that lite up in my chest cavity. That’s why I’m on xtandi and lupron. My MO said I’m stage 4.
My apologies Echo, I'm just a grumpy old sod. Ignore me!
Understandable.
Truly sorry it strikes you that way, Ben.
I have less trouble with it when I keep in mind that, no matter their stage, this beast scares the beegeeus out of most men; and I’m really glad those who’s disease is less advanced than my own have this forum to learn from and, hopefully, become better advocates for themselves if/when they reach the advanced stage.
I wish you all the best; and as much comforting as you can find for the balance of your journey on our Blue Boat Home!
youtu.be/WhsXl1_rEwI?si=RFq...
Thanks Shams, I too am happy for the guys who have it a bit easier than us. It just gets me down now and again when I realise how hopeless things seem for me and I'm getting such poor support from the NHS.
Truly feel for you, Ben. Seems to me there’s so little real justification for the poor service some of Nationalized Healthcare systems provide now. Just a small tax on the windfall profits some of the mega corporations have been making could help a lot, but there I go again getting all political. Mea Culpa.
Best Wishes!
It appears to be working just fine for you, might suggest you stay on course. I'm Stage IV Gleason 9, with Mets to Bone and Spine, year 4 on Xtandi (1/2 dose) +Lupron. PSA bounces around and sometimes rises, then stabilizes. I've missed a few months of Lupron due to the flu and Norovirus,most likely will rise from .9 in August but not too much, hoping once back on Lupron combo PSA will level off 🤷♂️ Good Luck to you 🙏
Thanks for your reply. I take all 4 pills plus lupron. This June will be three years.
There’s not much you can do unless it rises to a point where a scan is feasible. After a Stage 4 dx and various forms of treatment my PSA fell to undetectable levels for about 6 years. Then it became detectable again a couple of years ago. Once it reached 0.2 I was able to get a PSMA scan. It showed a spot on a rib that I treated with SBRT. PSA fell bot not quite undetectable. Last fall it began to rise again so same process, got a scan and it showed a spot on a different rib. SBRT again and now it’s falling again. It was 0.33 just prior to SBRT and latest one is 0.15. I’ll keep kicking the can down the road with SBRT as long as I can.
Ed
Ed, are you on any type ADT or 2nd gen drugs currently?
yes been on Lupron since day one, Xtandi and Avodart for about 9 years now per Snuffy Myers.
Ed
I’ve been on it now for 7 years. So far it’s been doing a great job
If your PSA doesn’t level off at somewhere below 0.20 then I suggest asking your MO or Urologist about Provenge immunotherapy. There’s a fairly narrow window of eligibility for it, and I think perhaps a lot of guys miss out because either their progression ‘blows past’ the eligibility criteria or their specialist isn’t much aware of this option. Also, getting it is sometimes a bit of a coordinaton hassle for the Dr.’s support staff; so if you get dissuaded at first then be persistent!!
XTANDI SIDE EFFECTS
Xtandi is failing
PSA at zero after 3 months on Xtandi, can it last?
rising psa while on xtandi
