1600 to 100 and counting

[Whiskeyriver]

Hi All

In the summer of 2023 I was diagnosed with Stage 4 prostate cancer. My PSA test came in at 1634. I was told it was in my bones had three years to live and put on Zolodex. Since then my PSA in December 2023 is at 109 and my CT scan shows no bone or organ problems. Each test gets lower and I feel fantastic. I am likely going to be adding apaludimide to my regime but would like to see where Zolodex takes me as long as the PSA keeps dropping.

has anyone had this experience. I’ve read a few stories of very high PSA with strong results but I’ve also read stories of people with very low PSA who have it in their skeleton.

my expectation with this high number and the doctors initial reaction was not very positive but right now I’m feeling strong and think I have a chance

Thank you and my best to you all

whiskeyriver

[Tall_Allen]

It is a big mistake to wait to "see where it takes me." We've learned that starting with the most aggressive therapy from the start has the biggest, longest lasting effect. What happens when you wait is the remaining cancer, instead of being killed by the therapy, goes into a dormant state (called "senescence") in which it is impervious to therapy and doesn't show itself with PSA.

[Whiskeyriver in reply to Tall_Allen]

Thank you Tall_Allen

I appreciate your advice as I was not aware of this and will bring this up with future appointments

[JohnInTheMiddle]

A big success WR! Also in Canada and my PSA started out at 1700 and it's now zero for a while (I have a new test shortly and I'm more anxious than usual). Slightly younger. But Tall_Allen, our in-house guru, is absolutely right about not waiting. There are very large clinical trials which basically say "hit it with all you've got as soon as possible".

It's surprising that this information was not presented to you by your doctors. May I ask please if you have a medical oncologist or perhaps you're working right now only with a urologist?

You say your CT scan showed no problems and that's great - but what does "no problems" mean - do you have metastases or not? Your bio mentions a large tumor - is that independent of your prostate cancer? It's interesting that you have not mentioned anything about treatment related to the prostate specifically. This reminds me of my situation where nothing was done to my prostate but that's because it was too late and I had distant bone metastases.

Time is of the essence; a wait and see attitude is not the best path.

[Whiskeyriver in reply to JohnInTheMiddle]

Hi JohnInTheMiddle

this started with several gastro issues I put up with it for a time and no matter what I did it was in and out week after week and I was losing weight I went to the doctor who gave me blood tests trying to find an issue as we thought it was an intestinal issue. She said my red blood cells were a bit low and after a few tests I was-sent for an ultrasound and that’s when I was told of the growth inside me below my stomach area. It was very large. Next was a PSA test where I got the news of 1600 From August to now I’ve felt great since they started me on Zolodex. My stats are getting better at every test and I am monitored at least once per month with blood tests A biopsy on my lymph nodes was done in November and a CT Scan in late December and to my surprise there was no bone mets. Doctors seemed sure that was a foregone conclusion so I was relieved but certainly not out of the woods

The oncologist has now been called in who is suggesting apaludimide with the Zolodex I’m seeing her Friday and expect I will do what she suggests this is all very new and I’m researching daily I’m doing my best to learn but my thought was should I just keep doing Zolodex because it’s working great until it stops or do I go to Apaludimide to fight this hard right away and based on response I think that is what I should do

Thanks for your questions

Whiskeyriver

[Whiskeyriver]

Thanks Moon Rocket. I’m thinking that is the correct thing to do as well

[Whiskeyriver]

Thanks Moon Rocket. I’m thinking that is the correct thing to do as well

[JohnInTheMiddle]

Good the medical oncologist has been called in. Cancer needs a specialist! As for the tumour, curious what happened to it? Good luck on Friday!

[Whiskeyriver in reply to JohnInTheMiddle]

It has shrunk and my stomach issues disappeared with it. Crazy stuff

[j-o-h-n]

3 years? I'd tell him in my best Canadian/English accent "Fook off Doc". You'll be around for so long, that you'll finish drinking up all that watered whiskey.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 01/18/2024 11:21 AM EST

[Whiskeyriver in reply to j-o-h-n]

That’s what I think too. Thanks for your encouragement.