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.
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.
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.
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.
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.
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.
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.
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.
Chemo wasn't too bad, went to office almost every day, but cumulative effect of 20 docetaxil treatments caused drop in stamina and strength. Had a short break over Christmas because atrial stenosis caused collapse on the way to office. Very lucky to not have broken something or could have died. Scary. Suspect the 9 years of ADT caused calcium buildup on congenital heart valve defect (>90% blockage before surgeons got around to inserting new pig valve thru leg vein). PSA is now rising after a nadir of 13.25. Restaging imaging will be scheduled next week.
After 18 months of docetaxel that "stabilized" the PSA (at the highest nadir at the time), it became obvious that it was no longer working. The medication was changed to cabazitaxel (Jevtana), but the standard dose proved too strong, crashing the blood counts. The dose was lowered 20%. After 4 cycles, PSA % drop was in the "non-responder" category, but MO was happy that the PSA wasn't rising ("stable"), so kept going for seven more cycles. Once the PSA turned up, the MO stopped ordering the test every cycle. the side effects intensified and the last week of a cycle was just as wretched as the first. Now I know that the MO was waiting for a clinical trial of Pamiparib to open at that cancer center. I am waiting for the results of a blood test to see if I qualify with homologous recombination deficiency (HRD). If not, then I don't know what the MO will pull out of his hat next. Another PET scan for re-staging is scheduled in two days. The past two years have been difficult: no longer driving, feeling wretched most of the time, avoiding crowds meant missing performances by talented family members and not being able to promote my books.
The first blood test was inconclusive, second blood test was negative: no Pamiparib trial for me. PET scan showed mixed results: one lymph node inactive, one node shrunk 75% with lessened active uptake, and one node growing with slightly lessened active uptake of the dye. It's a game of whack-a-mole. We wait to see what options the oncologist can find next.
What a difference one year makes. After a fall in the bathroom in the middle of the night and no cell phone signal, I wasn't found for 5 hours, the skin tears down my right side took two months to heal. Really scared me, my wife and my medical oncologist. The PSA was going up to 42, so the cabizitaxel was stopped and I was switched to Keytruda at the beginning of July. Four months later PSA was undetectable for the first time in the last 11 years and has remained so even with the four month break in treatment started early January because of the addrenal insufficiency crisis and hypothyroidism created by the Keytruda attacking the glands after finishing off the cancerous lymph nodes. Restaging scans are set for next week after 12 rounds of Keytruda. My medical oncologist has used Keytruda off label in the past with success, so thought it was worth a try. He is really happy and wants to use the "C" word (and I don't mean "Cancer"). Thanks to doctors like him, FDA has now approved Keytruda for men like me. It came with a price: the permanent loss of the adrenal glands and the thyroid. But I feel better and have published two books last month.
PET scan shows all nodes back to normal size and no metabolic activity. This includes the lesion on the pancreas. Medical oncologist is delighted and will keep me on Keytruda for another year.
Last Keytruda infusion October 2021 was followed a few months later by bloody diarrhea that I hid from family and doctors, definitely a poor decision as it delayed treatment for debilitating diarrhea for months. A colonoscopy determined the cause to be ulcerative colitis of auto immune origin: a known side effect of Keytruda. High doses of prednisone stopped the diarrhea, but the tapering off process was too rapid, causing the diarrhea to return with a vengance. Dehydration became a problem, landing me in the ER with what the doctors called "septic shock." They ran all the tests, but never found an organism to blame as the septis source (because it was auto immune attack). I worked very hard to achieve the goals for release in 18 days in order to get home to recouperate. I am very depressed and have no interest in either exercise or food - have lost 20 pounds in the last two months to 135 lbs. I used to be ~200 lbs. ten years ago. The new hand tremors have destroyed my handwriting legibility and made using the computer mouse impossible. My wife is typing this for me.
This past year was a difficult struggle to regain mobility after leg swelling led to skin breakdown. The new normal is weaker. Scans showed old stroke scars which may have been the cause of the two bathroom collapses. Short term memory is unreliable. I worry that my overworked wife will fall asleep while driving, so I try to accompany her as much as possible. My handwriting has improved to semi-legible so I have gone back to writing novels. This spring the PSA suddenly rose from undetectable to 0.4 and I am scared. The MO won't recheck it until November.
Last fall a filet mignon dinner with old collegues at a restaurant created the worst ever stomach ache + vomiting and fever of 103 degrees by morning. Four days in ER + ICU then sent home without a diagnosis as to causative organism. Wife did research on line and at the next primary care visit insisted that a specific test be added to the usual blood tests. Test results: positive allergy to beef, pork, lamb, and probably deer - known as alpha Gal allergy. Wife had developed this allergy to mammalian meat some years earlier. We live in the boonies with lots of ticks of various types.
Next ER visit was possibly the result of attempting to move a fallen limb causing a brain bleed which resulted in a fall with skin damage. The ensuing fever spike of 103 degrees = call 911. Extensive scans showed atrophy of pancreas among other things.
Latest ER visit was once again a high fever, caused by Covid-19, only a 24 hr stay as the hospitals are overloaded with Covid-19. My daughter lives with us and had emergency gall bladder surgery (4 day stay) three weeks earlier. She was diagnosed with Covid-19 the day before I got sick. Wife tested positive two days later but felt bad only one day.
I have stopped writing novels. I try to help my wife as much as I can. I am having memory problems.
