2018 still kicking

[leo2634]

Good morning, Brothers. I was diagnosed on February 27th, 2018, and just got my most recent report. PSA is still 0.1 bone mets, which are still multiple but stable, either no uptake or diminished some. My only treatments have been Zytiga and Prendisone with Eligard injection every six months. I also received Provenge infusions back in 2019 so far, so good. Side effects from these treatments are many over the years, but all in all pretty tolerable for those of you who are on hormone treatments. You know them all too well . Never give up. Never surrender, Leo ♌️

[Kaliber]

congrats brother. Same here ….October 2018, psa <0.1 ( was 1400 ) Lupron Xtandi Zometa. In a wheelchair from SEs .

Keep on keeping keeping on brothers. Eye on the prize , keeping alive w/ loved ones.

❤️❤️❤️

[Balylone in reply to Kaliber]

October 2017 and still kicking algo thanks to Zytiga. When diagnosed, my future was so unclear I never expected to reach my daughters 25 years but here I am.

My APHP MO is quite puzzled. She told me I was a survivor. We realized from Stampede trial final report that patients when diagnosed stage 4 face a cliff which takes many of us… but the survivors enter a tunnel where the yearly toll is much lower.

Today il looks like lottery but one day science and medecine will help us understand the odds

[dhccpa]

Can you tell us more detail about Provenge, which seems to be used sparingly. How did it come to be used in your case, what was it like, side effects, success. Thanks. Provenge is a bit of a mystery to me, as it doesn't seem to be widely used in FL.

[leo2634 in reply to dhccpa]

I had Provenge back in 2019 my Oncologist called me and said was a good candidate for the infusions because he liked to administrator them when PSA is at its low points. It consists of three infusions sort of works like a blood transfusion machine you sit in a bed attached to the machine blood is taken out of you and transferring it to the machine where a part of cells are extracted and blood is put back in the other arm. The process takes about three hours then the cells are processed with the Provenge and three days or so you go back and they are put back in you through introvienus this is done three times over a period of weeks very little side effects chills for the most part. I was told it prolongs life by up to three years so fa so good.

[dhccpa in reply to leo2634]

Thank you!

[MomOfMaisy in reply to leo2634]

So, if a patient is already doing well with Zytiga, prednisone and Eligard injections, PSA undetectable after radiaton, should he leave well enough alone and continue as is, or would he still be a good candidate for Provenge? This would be my husband. I’m not sure if his MO even offers it at his facility.

[leo2634 in reply to MomOfMaisy]

As all my Brothers here would surely say whatever is available and will extend our life go for it.

[Teacherdude72]

Great attitude!

[j-o-h-n]

Good to see you here and thrilled that you -Never gave up and Never surrendered...

Good Luck, Good Health and Good Humor.

j-o-h-n

[leo2634 in reply to j-o-h-n]

Hi John I'm not sure why but I wasn't able to view this site for a long time just recently started popping up in my emails once again.

[j-o-h-n in reply to leo2634]

See Ai works..........

Good Luck, Good Health and Good Humor.

j-o-h-n

[SteveTheJ]

Good news! I'm in a similar situation albeit diagnosed in 2020. Very happy to be doing as well as I am.

[Bodysculpture]

Well done here is some more good news I was diagnosed STAGE 4 in 2019

We did the stampede trial

Psa 0.07 residual dot left in the ribs no pain

Still training 5 days a week intensely I am not as strong not as fast but twice as funny twice as loving twice as caring because I know what it feels like to suddenly be told

The countdown has started

[Maxone73 in reply to Bodysculpture]

how true!!