THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2017 SO THERE IS NO UPDATE.
Working away from home I noticed a lump in the supraclavicular region of my neck. Found a cancer center on the east coast. Biopsy of neck performed, surgeon stated that I would live for awhile. Still in recovery I wasn't sure I heard him right. I contacted another doctor at this cancer center and was told that I had metastatic prostate cancer. PSA of 470.0 confirmed it. I didn't tell my wife until after my neck biopsy. Don't do that!
Living in the midwest I always heard that if you were ever in trouble the Mayo Clinic was the clinic to go to so when I got home that's where I went. My prognosis wasn't good, prostate biop was 9, many lymph nodes involved. Hormone therapy was started, 1 dose of firmagone, then lupron and casodex. A year and a half has passed. PSA dropped to 0.24 but has started back up. Doubled last 2 times. C11 choline scan shows nothing yet. Doc is hoping next visit and with the help of a c11 choline scan he will be able to pinpoint the tumor and target it for treatment. My doc at Mayo has kept a close eye on me and is a straight shooter and no matter how this turns out, they are my dream team. From his staff to receptionist, kudos!!
I would like to thank my wife of 36 yrs. She who has went through these hormone treatments with me, I apologize for that. I wouldn't wish that on any wife. She's my shining star and the one that keeps me afloat. I love you Tonya.
Starting chemo today. PSA doubles every 70 days. C11choline scans shows it in prostate and pelvic lymph nodes. I seen it working live - it looks pissed off. Doc from Mayo wants me to have chemo and then radiation. My doc is a professor of immunology and uro. He sent me to oncol. At home for chemo. To get chemo from him is tough. I told him my faith is in Mayo. Besides that it's a better address. Listen guys find a good doc and put your faith in him. It;s a bad sigh when an oncol. writes down 8 drugs and tells ya to pick one. Your doc should tell you the drug he wants you to have. I want to thank bb my friend for 20 years. We've traveled these states from one nuke plant to the next. The road has been long and the snow deep at times. We will be friends til the end. Thanks.:-/
Last talk I started chemo. Taxotere. Oncologist give me 2 cycles then told me it wast working. He never called back or talked to my primary dr concerning alternative treatment. I was left standing in the street u might say. It took appox. 50 days to schedule new oncologist and start treatment again. Tumur growth about doubled waiting on doctors. Blood serum markers showed chromograin levels at 200 normal is less then 95. This marker indicates neuroendoctrine prostate cancer. This is small cell prostate cancer. Very rare and very aggressive. I'm being treated with taxotere and caboplatin and prednisone. appoitment for imrt radiation in may. You guys with high gleason scores on hormone therapy keep a good eye on your blood work. My 2nd cycle of chemo is on April 28th. New oncologist stated I should have been given 4 cycles of chemo before a decision was made to take me off. If you're primary dr recommends an ocolgist you might listen because I thought id save some driving time by choosing one at home and I believe it cost me dearly. I will give an update after radiation. Take care for now.
Sorry for the delay. I've had 6 cycles of taxotere and carboplatin with prednisone and neulasta, PSA dropped from 14 to 1.2. 30 days from my last chemo and 1 day before I started imrt my PSA; rose to 2.2. 5 weeks of imrt and xtandi. 30 days later my first PSA; test is 0.23 and my small cell markers (chromagranin) are down. Dr. As well as I are pleased. I live off of my dr's optimism. I've been told by other dr's that chemo and imrt won't work because I'm systemic with mets. Fatigue is my only side effect so far. C11scan in 90 days with PSA; test every 30 days. My wife and dr's are the best medicine.
75 days After 25 treatments of IMRT and 160mg of Xtandi my PSA; is 0.15. This is treatment for systemic, metastatic stage 4 prostate cancer. Good luck everyone and take care.
Hi everyone. 4 months since IMRT of pelvic and prostate. Started xtandi approximately the same time. Dr. Appoint. With Dr. Kwon at the Mayo Clinic on Dec. 11, 12th. C-11 choline scan shows blue everywhere which if I've heard right, IMRT and Xtandi still killing cells. The color Orange is live cells And I had no orange. PSA is virtually undetectable @ 0.11. Serum markers are all normal. Liver function test starting monthly from here on out. I have to say something about Dr. Kwon . Been to many dr's and was told certain treatments wouldn't work for me and they popped my balloon. Dr. Kwon never give up on me and I never seen him sweat so to speak. He is one cool rebel of a Dr. Not only that we have become friends. He and his staff are good at what they do and as I hold my 2 year old grandson on my lap I have them to thank for that. Off of Xtandi today and going on Zytiga next month. How long radiation will work is the 64 million dollar question but one has to live for today and today is great. Merry Christmas to all and I wish you well.
One year after I imrt PSA; jumped to 4 from 0.11 in 45 days. C11 choline scan showed bone Mets in spine and lymph nodes. Had 2 cycles of cisplatin etopisde PSA; is now 17. Insurance sent letter stating this treatment is experimental and refuse to pay. Talk with oncolgist in 2 days concerning this. Ive failed every treatment so far. This is one brutal cancer fellas but the treatments have beat me down and I'm tired of them also. I havnt given up but I think it's about time to get my affairs in order. Words from Jimmy Carter says it best" either way is ok with me" take care fellas talk with ya soon.
Thomas's e-mail address is: tbsstel AT aol.com (replace "AT" with "@")
NOTE: Thomas has not updated his story for more than 15 months, so you may not receive any response from him.
