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George B lives in Georgia, USA. He was 71 when he was diagnosed in July, 2009. His initial PSA was 40.50 ng/ml, his Gleason Score was 9, and he was staged M1a. His choice of treatment was ADT-Androgen Deprivation (Hormone) (ADT2). Here is his story.

Biopsy confirmed spread to periaortic lymph nodes after bone scan showed hot spot anterior to spine. Told not a candidate for surgery or radiation.

Immediately put on Casodex followed by Lupron shots, PSA nadir 0.21, biochemical failure after 13 months. Casodex was dropped, Androgen Withdrawal Response lasted 7.7 months.

January, 2012, PSA 11, PSADT 22 days, put on high dose ketoconazole + prednisone in addition to the Lupron. After 9 weeks, PSA is 1.7, feeling good, only side effects peeling lips & tearing. Bone scan clear, CT scan showed prostate and all but one periaortic lymph nodes near normal. The enlarged gland is right below a renal artery and not any of the ones noted in the first scan. Would like to avoid chemo to be able to continue working. Would like to have the enlarged gland removed, but can't find anyone willing to try it. PSADT at 22 days is too short for trials.

Depressed.

UPDATED

March 2013

The high dose ketoconazole + prednisone worked for 6.5 months, but made his skin so fragile that he couldn't get a handkerchief out of his back pocket without causing a bruize or bloody tear. He wanted to do a clinical trial with the bird pox vaccine at NIH. Weaned off the ketoconazole + prednisone on their orders, he arrived only to be told that his preferred trial had gotten held up by bureaucratic approvals and wouldn't open in time. He refused the other trial that was 3 armed, figured he couldn't win at this rate. He refused to gamble. He can be very stubborn. They advised him to try Provenge followed immediately by Xtandi and when that fails try abiraterone. Nothing ever happens immediately when dealing with insurance coverage. He completed the Provenge but had to wait an extra week for the insurance verification before he could get the Xtandi. Right now the PSA;dt is 2 months, what it was after the keto. We will have to wait to see if he responds to the Xtandi. To ease his mind, he is working on writing historical fiction (his version of the bucket list), trying to publish #4 while working on #5.

UPDATED

April 2013

After the Provenge treatment the PSA was 15.5 just before starting Xtandi. After two weeks on the Xtandi the PSA was 7.8, so we have hope that something is working. The headaches have been a slight bother easily controlled with over the counter medication. Fatigue continues to be a constant presence.

UPDATED

May 2013

Celebrated 75th birthday with news of PSA drop to 3.0. Really hope that next month's reading will be half again. Four years ago when we got the diagnosis, he didn't think he would see this birthday or be feeling this good.

UPDATED

August 2014

Happy to celebrate 5 year anniversary of diagnosis with the lowest PSA ever since this whole roller coaster ride started. Coasting from one PSA test to the next hoping that at this level the wobbles are due to changes of laboratories or error range. Really wish the insurance companies wouldn't keep jerking the doctors around forcing them to switch labs. The labs won't say what type test standards they run so one can't tell if they are truly comparable. Still don't want to think about starting chemo. Probably next step will be another try for a clinical trial. NIH gave us good advice on the combo of Provenge followed by Extandi, but each case is different.

Sorry if emails went unanswered. Problems with AT&T. May change email again soon.

UPDATED

September 2015

Nadir on Extandi was in March 2014 (0.10) and has been slowly rising since then at a decidedly slower rate than prior to the Provenge/Extandi one-two punch. Because of this PSADT change and the new nadir, it will be another year before meeting eligibility for a Prostvac trial. That is if all remains the same and the insurance company continues to pay for the Extandi. Not sure if mental confusion/memory issues are due to treatment or age. Still working though it is harder.

UPDATED

March 2016

Currently off Extandi because of new PSADT of 2 months. Over 3 years Extandi caused the tumor by the kidney & aorta to disappear. CT shows new tumor at L1 level between spine and aorta. Going to NIH to try to get in a clinical trial next week.

UPDATED

April 2017

After Xtandi failed, he entered a clinical trial at NIH of VT-464. He was told that the drug had a severe side effect in ~1/3 of the men that was reversible if caught early. In him it caused a severe decline in neurological state. His wife had to keep a diary to document the changes. He suffered from visual effects (upon exiting a building into sunlight he would see light flashes everywhere) that the doctors had never heard from a patient before. They reduced the dosage but he continued to decline. Before starting the medication, he would ace the "count backwards from 100 by 7" neuro test. After three months he couldn't get the first number (93) and was on his knees on the examination room floor because he couldn't do the balance test and finally realized that he was in trouble. The VT-464 made his PSA drop from 8.59 to 5.2 in a roller coaster fashion, "controlled" according to the doctors. He was taken off the trial medication. At the four month exit exam, he was still confused, and still to this day thinks that the "worse than chemo brain fog" (NIH's term) started after being removed from the trial. NIH told his wife that after another month of possible improvement, not to expect any further improvement. He is not the man she married now. He is like a kid: no impulse control, impatient, easy prey for scammers, prone to violent tempers, and has his own version of events and facts.

The local oncologist, not knowing what else to do at this point, put him on Zytiga + prednisone and had a liquid biopsy done. Too bad he hadn't done that sooner because the Zytiga put the PSA on a roller coaster ride back up to 24.26 and cost George >$7000, $2000 more than the cost of the test. You'd think that the insurance companies would spring for liquid biopsies as it would have saved them >$100,000 for the four months he was on it. George had hopes of another clinical trial, but his new tumors are located in lymph nodes too tightly associated with the aorta and spine that cannot be biopsied. They are growing at different rates, so must be different mutations. That's why the oncologist started George on Docetaxel last month. George had refused chemo for 8 years in fear of "chemo brain fog", but the VT-464 brain fog forced him to retire. He was supposed to have a port installed a few days before, but he came down with a cold and fever that week, so it was cancelled. So far he has had only his first infusion that seemed to go well with only mere suggestions of what is to come in the way of side effects.


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