24 Years and counting..........

[Inlindon]

At 79 years old I have lived 24 years with prostate cancer. Here is some history.

Received Radical retro-pubic prostatectomy surgery in 1993 PSA 8.0. Biopsy found cancer in the margins, Gleason IV carcinoma. Waited for (option one time limited radiation) 6 years later, PSA over 5 , dropped to 0.1 PSA held steady for 10 years with a arise to 8.0 with no medication. I had a sudden rise to 69.7 in Nov. 2011 ( bad timing, I missed my prior 6 month check up.) At this time did a bone scan, cancer was now metastatic prostate cancer. My Urologist started me on Lupron injections. With in a short period my PSA dropped to 0.4. At this time I started with an Oncologist and continued with Lupron injection every 3 months. I am presently getting (Taxotere) chemo injections every three weeks.

Medications I have had -- Elgaed, Xgeva, Predisone, Delepain,Neupagen Y, Zytiga,Proveng, Xofigo. I did a group A clinical trial (no placebo) for about 5 months, but discontinued because of the side effects. At that time I stopped my exercising which was inline skating (5 to 7.5 miles three times a week). I still do sailing at times, that is when I am feeling half dissent.

I have attempted to add a PDF file, with no success to this site. It is a graph time line which shows the relation from medications to PSA levels over my years of treatments.

[Burnett1948]

Burnett1948.Thank you. My surgeon missed 6mm at one end. My treatments & PSA journey before dugs is similar. My surgery was in 2005 and radiation was in 2009. It is good to know that hormone & chemo will help.

[Inlindon in reply to Burnett1948]

Being new to this site, I found others very responsive as I viewed their posts. I am glad the replies to my post toke it as encouragement. I am one lucky, no pain, survivor.

[Attitude67]

You've got four more years with the disease than I do... My suggestion...Try a little Lyposomal Vitamin C. Read up,on oromolecular, vitamin, therapy. Since I started taking it 6 g daily I feel much better. That in itself is worth it.

[Neal-Snyder in reply to Attitude67]

Is it making you feel better in general, or is there some relationship to your cancer pain (or PSA or imaging)?

[Attitude67 in reply to Neal-Snyder]

I am on Lupron. I take a three month dose. Presently I am using a vitamin C regimen of at least 6 g daily. After I knock my PSA down below two I take a break, waiting until I reach about 10 before I take another Lupron shot. I have found that orthomolecular nutrition, particularly vitamin C in lyposomal form increases my doubling time during my intermittent phase significantly. I have enjoyed as long as five months off of Lupron thanks to a good regimine.

[Neal-Snyder in reply to Attitude67]

That's impressive! Thanks!

[Daddyishealing]

Ty, and congratulations on so many years of health and I'm impressed with all the activities. Sailing is much harder than it looks like when the pretty sailboats go by. Lol Ty for being one of them and also for providing such information and inspiration

[lucky999]

it would be nice, if someone with metastatic mets with long history, encouraging survival ,puts a brief, for encouragement of others, like we got from Dan59. thanks so much.

[Hidden]

I'm impressed simply by your ability to type a very coherent letter on taxotere. It's one vote for accepting chemotherapy.

[Hidden]

Way to go Inlindin. Too often we hear of men who are taken in no time, then we have heroes like you. And, I'll add Eric to that group. I know there are way many more, but it's nice to hear of someone whose been through the wringer, and can put many of us at ease.

Thanks, Joe

[Inlindon in reply to Hidden]

It is not me alone. My hero is Medicare, VA and doctors. My costs must easily be over a million.

[Hidden in reply to Inlindon]

A mil only. I would bet more. The VA gets beat up a lot, and so does Medicare, but I hope you were treated well. I would like to pass along a story that recently happened to my wife and me. I know "I" is correct, but I don't care anymore.

I am on my wife's work insurance. I also have Medicare Part A, through SS Disability. She happens to work for a large medical group here in S. Jersey. Hospitals, Family Care, and Urgent Care, so that narrows it down quite a bit. Well, my wife gets a call requesting I change my Primary insurance to Medicare. Not to say Medicare is a problem, but why ask when I have excellent insurance? Money. I was pissed. To put an end to it, if I ever have to go to the VA it will be in Philly. I have a young friend of my son's who's been in Iraq/n, Afghanistan, a few times, he tells me of the horrors of the VA. He's 33. He doesn't speak highly of it.

Joe