I am 10 years out which puts me at GPCa...where G stands for Gustave. The first paragraph of the reported Prosper Trial, that was posted by Patrick, could have been written in 1985 when Huggins's discovery led to Lupron. In 1985 RP which fails and leads to SRT which fails and leads to Lupron which fails. Back then when Lupron failed a guy could then go on low dose DES (1mg) + Nattokinase and the OS would equal Lupron failure - Zytiga failure - Xtandi failure. So, at 10 years out either TMD (the morphine drip or wrestling Gustave is in my future....I choose Gustave now in 2018 and I could have chosen Gustave in 1985 as Crocs can live 200 years.
Gus , congratulations on the 10 year mark. I suspect you will never have to wrestle Gustave, especially with your knowledge of APC and persistance to beating the beast. Just finished 16th chemo, how many can I do?
I wish I had your confidence...I have failed every curative treatment I have tried...RP +SRT + Cryo for Oligometastatic at the Mayo Clinic (3 Choline 11's + 3 MRI's + Cryo = $470,000....after Cyro failed the Onco's famous last words were Gus, if you live long enough you will die from PCa...Now I just got a call from Mayo that they want to try the Cryo again....but I just read a study that treatment of Oligo buys only 8 months...I think Mayo is looking at an easy $470,000....right now I am treating myself with Xtandi/BAT and when that fails I hope I can get Darolutamide and then Gustave
I think you are in good hands, not to mention you are pretty well studied yourself, we should have a planned fishng trip in the south in 5 years with others that would enjoy such a thing,rent a boat.
Dan, I need goals to keep me going, I'll meet you anywhere in the world for a fishing trip in 2023 - so we both need to stick around for it, no excuses!
I've been to the US several times too, so I'm open to any suggestions. I'm reading a book called 'Radical Remission' and one of the key elements to survival is having a strong will to live, I have my kids, but I like a goal, so I will add this to my reasons to keep fighting. I'm sure you have your reasons to keep fighting going by your success to date!.
Hey Paul, my Onc said to stop reading Dr Google because it is outdated. He said, we are not a statistic. Last year when I told him I wanted to retire in 4 years, he gave me a smurk and said Why??? I expect you to live many years past that. I am confident that you will live to see your kids finish school and get married. Before you know it, you will be a grandfather and be the prime baby sitter. Australia is in my wife's bucket list. I so want to watch the Australian Open. Best regards.
Paul, I am really liking this plan, Strong will to live is everything, and you have that as well. I have read many stories of long term survivors who have far-beaten the odds because of a strong will to live and a purpose, one of the best is the story of Steven Jay Gould who was given 8 mos to live with mesothelioma ,He survived over 20 years, and died just after completing his greatest work in scientific literature , “The evolution of the Species”. Here is his story. phoenix5.org/articles/Gould...
Thanks for you kind words, that is me in profile pic ,at 20 yrs old jumping of a bridge on Maui circa 1976, Demonstrating the real cause of my degerative bone disease.
Gus that was the docetaxol,every three weeks for 12 total, took a break to do extensive pelvic radiation, and then Jevtana every 3 weeks for a total of 4 so far, I am lucky it does not make me sick, I woke today after just 5 hours of sleep, I suppose because of all the steroid premeds. I feel ready to go today, will be on the roadbike later after coffee. The 3 week off in between I really enjoy, and it only takes about 2.5 hours for Dr Appt and chemo, just 10 minutes from my house. The good news is when hair regrew after original 3 cycles of docetaxol, I was worried about it restarting taxanes, but it has grown thick and wavy with almost all gray gone, Only thing I did different is rub vit e oil in my hair before chemo and leave it in for a few days, not sure if its the vit e, avodart or just my biology. but that chemo can curl a persons hair.
Gus , I have been off Ursodiol about 6 yrs or better. I did it for about 5 yrs. at 300mg twice a day as prescribed by Myers on the one and only time I saw him, my psa was bouncing at 9 to 12 on original zolodex 3 mo and avo , when I saw him 6 months after dx, he prescribed the Urso, and triple dose casodex (150), i was already on avodart,the casodex 150 dropped my psa to 6 but sent liver numbers 3x ULN (upper limit of normal) so switched to E patch and got psa down to 3 with zolodex continual,When lfts(liver function test)back in range Sartor put me on Nilandron for a good response. I did urso 300mg twice a day for 5 years since then my ast and alt,TB ect... has been at the lowest number in range through all therapies. I did have to visit a liver specialist to verify the benefit of urso to new MOs ,but since then my liver has operated like. Awell oiled machine.
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