Good news!

[Tekton]

My scans and psa came back perfect again. Just under 3 years of Lupron and no mets. Plus a few spots of concern on previous scans have vanished. My MO thinks maybe stop Lupron if next scans are good again. I am Gleason 9 with very low PSA at dx. He said my Ductal feature typically doesn’t respond this well to Lupron. No explanation other than God's grace.

Thought maybe a good news post would be, well, good to hear.

[strummer]

Congrats!

[NPfisherman]

Great news....Congratulations....may your scans remain clear and may the force be with you...

Fish

[Kimmilemo]

Wonderful, Prayers in numbers work!

[Hazard]

Great news, keep it going.

[tallguy2]

Awesome news! Congrats!

[j-o-h-n]

Ton of Congrats...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 02/08/2019 8:10 PM EST

[greatjohn]

GREAT news ! ! !

[Trecento]

Wonderful.

[Jbooml]

Gotta ask.....did you do or take anything unusual to produce these fantastic results...wow

[Tekton in reply to Jbooml]

I actually made no change to food or exercise. I have always been skinny and busy but detest "exercise". I should have learned to work out just to keep some muscle mass.

God has been determined to keep me alive the last 10 years..... one more example !

[Jbooml in reply to Tekton]

Thanks for clarifying...btw...i was reading about the danish guys superb results and he mentioned his T levels are abnormally high despite ADT interventions which may explain a paradoxical protective biochemistry...do you keep track of yours?

[Tekton in reply to Jbooml]

I did for a while but MO didn't feel needed. My memory is that it was low or non existent. I'm guessing on that.

[Twoofus]

It is good (actually great) to read this story. Thank you for sharing. Lots of Lupron has been used by the men on this site. I am at about 3 years on Lupron; had to add Casodex 4 months ago; and my scans remain clean and PSA stays under 2. Only recently did I start appreciating where I’m at. Still have severe pain and fatigue issues but working on those.

My rating system puts my prostate cancer in the stable category. I hope many more can achieve this for a decent period of time.

[Jbooml]

So many others cases in trying to dicipher the ‘rules’ which vary enormously....your case is intriguing in the matter of pain and fatigue. I would have thought it would diminish with the ‘burden’ ....do you have bone Mets...that’s my flavor and not particularly afflicted...It does however bother me that you are....can I ask...my Docs we’re very quick to move me off bical(Casodex).....is it a preference of yours or your team?

[Twoofus in reply to Jbooml]

Pain and fatigue have been my largest problem in this entire misadventure. Huge problem hit me in late August/early September, 2015. Went to numerous doctors and was diagnosed with about 8 different issues. Finally diagnosed with Prostate cancer in late 2015. I know most here love MDAnderson and Mayo Clinic, but my experiences at each were nightmares. Returned home from these consults and started radiation in addition to Lupron. What appeared to be a success was a treatment failure. Cancer has been under control with Casodex added recently. Lost 5 teeth In 2017 and dealing with that for about 4 more months.

So that is me now: pain and fatigue, PSA staying under 2, clean scans, exercise is off and on, lost 50 pounds since September 2017, toothless in lower front, accepted intercourse is in the past, not sure which way to turn, and I’m almost convinced most of the doctors I’ve seen, including my current MO, are incompetent.

The current thinking is the cancer is messing around in my bones.

I don’t have a preference for Casodex but it didn’t introduce any new side effects. In a few weeks I hope to find out my PSA has dropped below its current 0.66.

We lack Prostate Cancer experts where I live. Closest is Charlotte.

Pain and fairly good quantities of morphine and Percocet have reduced my driving range. My wife is great I hauling my ass around but she can’t go all the time or everything else might go to hell. Friends have been good but I limit my request of them.

All of us have similar stories; simply substitute my problems with yours. Many have much worse issues. That’s why I have learned to appreciate where I’m at.

[Jbooml in reply to Twoofus]

I think it’s prostate cancers many faces that confuse the Dx. You’ve found something in Casodex....which makes me wonder if my Docs have ‘dropped’ it without good reason in my case...if it ain’t broke don’t fix it..is my second guiding principle...as for your pain and especially the loss of teeth...sounds like the germline is evolved to metabolically scavenge your cartilage..I haven’t heard anything about the hyaluronidase or other like pathways with PC but I wouldn’t put anything past this disease using whatever substrate available in evading detection.....it’s a shapeshifting b movie heavy....ruthless and persistent in its guile.

Sorry to interject like this but I feel we have to contribute as aggressively as our collective enemy....I don’t want to be complicit in its crimes.