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ernieb
Posts: 3
Joined: Aug 2003

I just discovered this site so I thought I would throw my two cents in.

I was diagnosed with testicular cancer in 1977, when I was 29 years old. I was also a late Stage Four when they told me why I had so much pain. I had cancer all through my back, all through my abdoman, up my spine, I had twelve tumors in my lungs, and my entire lymph node system was infected. I was given six weeks to live, if that. The first four doctors I went to for treatment told me not to waste my time, go out and get my life in order because I was gonna DIE!
Then I found a guy working in the Cancer Research Clinic at University of California in San Francisco and he said "You Gonna DIE" but, if I was willing,I could join a clinical trial group that was testing some new drugs for testicular. I was told that none of them had worked yet, and I would probably die anyway, but currently, it was the only thing available. Well, of course, I said okay.

So I checked into the hospital on December 21, 1977 and spent the next six months going in for eight days and out for two weeks (to get my strength and blood counts back up) and in for eight days and out for two weeks, etc., etc. I was in the clinical trials of cyst platinum, bliomycin, and valban (hey - so I can't spell).

What a *****!! Especially the platinum!! I had every side effect you could possibly have - physical pain, vomiting 24/7, including going totally blind for about a week. I also got a severe case of phlebidis in my left leg due to some of my lymph nodes shrinking and had to go on heperin and some other blood thinners while on chemo.

After taking ALL the chemo they could possibly give me, I went in for another CT Scan and still found active cancer. SO . . . . .they gave me more of the three chemos. After that, they put me through another CT Scan and STILL found active cancer. So, after a consultation with my family (all there was was my sister and me) we went in to surgery and I had 117 lymph nodes removed. Ten hours on the table and 30 days waiting for the results. They told me if the surgery didn't work, I should go to Mexico and drink as much tequila as I possibly could 'cause I wasn't going to be around much longer.

Well . . . .when we got the results from the lab, I was in total remission. Everything was dead. I actually was one of the first to go into total remission with these new drugs.
Well, since they finally had a live one, they weren't going to let me go, so . . . . I was put on TWO YEARS of maintanance chemotherapy - just the Valban, but, what a *****!!! for two years I had one lousy week, one bad week, one sort of fair week, and one good week. Then I'd get another dose and do it all over again.
After two years of additional chemo, I was finally diagnosed to be in remission and clean.
That was almost 25 years ago.

Having cancer at such a young age was certainly an eye opener for me. I had already been to Vietnam (22 months in country) and had been through college and had a career - but certainly the experience of all the pain and the stress of the expereince teaches you a lot. Once a cancer patient (survivor) always a cancer patient.
Even after 25 years I still get involved with talking with current patients. Two summers ago, I was reading in the local paper about Lance Armstrong and how he had won his fifth Tour de France, and all he went through. I read that he had said, sometime in 1997 or so, that "some guy, 20 years ago, went through an awful lot of pain and suffering so that I could live". Well, I didn't know it for 25 years, but that guy was me, and a few others in my trial group. Lance had the same Chemo I did but didn't have to go through all the other stuff.

It's been 25 years and I have had a life that I wasn't suppose to have. Although I've been sterile the whole time because of the chemo and surgerys, and I've had some physical challenges the entire time because of the cancer, it's a small price to pay to be able to live a little longer, help other people, live in this beautiful Country, and leave the World a little bit better place.

So if any of you reading this are challenged by cancer or anythng else,
have a positive mental attitude (that's REAL important),
get yourself some good doctors and trust them, and when you're over it and healthy again, say thanks every day by practising senseless, random acts of kindness to all the people around you, family and strangers alike.
Share what you learned by bringing smiles to people's faces.

mc2001
Posts: 344
Joined: May 2003

Right on Ernieb! Thanks for the story... it is inspirational. I was treated for leukemia at UCSF. I think its an awesome hospital. God bless you.
-Michael

ernieb
Posts: 3
Joined: Aug 2003

I actually think that if you have been diagnosed with any kind of cancer and are not sure of your options, try to find a teaching hospital that is connected to a high quality university. They usually have all the latest stuff and use the latest techniques. I know it was probably what saved my life.
Ernie

jquick's picture
jquick
Posts: 2
Joined: May 2005

First of all: Ernie, THANK YOU for suffering through early testing of the silver bullet (cisplatin) and helping keep hundreds--no probably thousands--of us young guys alive!

Second, I absolutely agree that teaching hospitals are optimal. I went to UNC Hospital in Chapel Hill four years ago, and besides having just great facilities, equipment and doctors...they actually had an established system for my various doctors to meet and collaborate on treatment plans. Plus, just logistically, it usually means you won't be chasing all around town to different clinics.

Jason

jopus314
Posts: 4
Joined: Jun 2005

ernieb,
Thank you. What you endured in 1977 made my experience in 1985 much easier. I was late into Stage Two. My oncologist said that I would benefit from a lot of research that had brought significant progress against testicular cancer in the preceding 10 years. That research was through men like you. Thank you.
As for me, I had some operations, then several months of chemotherapy. (You're right -- the platinum was the worst!) I finally reached remission in August 1985, almost 20 years ago.
Thanks for what you did for guys like me!!

Joe
Testicular cancer 1985
Hodgkins disease 2002

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