Update after LU 177 PSMA

[Jackpine]

I haven’t posted in a While wanted to give and update on dealing with this crazy disease. After finishing the Vision trial in May, I was able to enjoy a wonderful summer with minimal issues from the beast except some back pain. In August scans showed left rib and right hip showing the disease was trying to make a comeback and PSA rose from 2.8 to 4.6. Did 5 fractions of SBRT to the spots, went this week for scans and the treated spots are showing reduced activity and PSA at 4.9. I was actually pleased with the 4.9 since before LU177 my PSA was doubling every 3 weeks. So things were going well except that the scans did show a broken T12 vertebra ( Beast just keeps giving me surprises). So next week they’ll glue the T12 back together and we’ll see what happens next.

Hang tough, and believe this will beaten one day!

P.S I believe I cracked the T12 while trying to hit out of a wet bunker. I’m fortunate I didn’t cause more damage as I played several more rounds of golf with the sore back.

[Fairwind]

If the LU-177 does nothing more than gets the doubling time under control, it will be a success..I too was lucky enough to get into the Vision trial with a PSA of 2300 which was doubling every 30 days..After my first treatment, PSA dropped to 730, a 65% reduction..No PSA reading after my second infusion but full labs to be done next week..Hopefully the downward trend will continue....Best of luck to you....

[Jackpine in reply to Fairwind]

Awesome results Fairwind! Did the initial injection knock you down for a few days with the significant reduction in PSA?

[Fairwind in reply to Jackpine]

Yes, the Lu-177 infusion made me feel crappy for a couple of weeks. The rebound was slow..Second infusion not so bad. Took Ondansetron (Zofran) for nausea which was effective..The LU-177 has a half-life of 6.6 days so it takes a while before you "cool off" and start to feel better.. Drink all the fluids you can to keep your kidneys and bladder flushed out..I also take 1500 mg of calcium a day and D-3 too..

[Ld2018]

We had similar trouble with deterioration of the bones. Several procedures and hospital stays later, the beast moved in and took over his liver. In the family meeting to discuss transfer to a hospice facility I asked if it was the Xtandi that weakened the bones and was told that yes, they learned that through the trial. When it was discovered (PEACE III study) he was started on Xgeva but it was too late. Don't be discouraged, Jackpine, your overall success with reduction in PSA and mets far exceeded his progress. I wish you the best in your continued journey.

[Jackpine in reply to Ld2018]

LD2018,

Thank you your response and experience! I do hope your loved one can find relief and peace. Your family will be in my thoughts and prayers.

I have not been on Xtandi but I know with all the radiation I’ve had and metastasis my bones are very weak.

[Chask]

Hi Jack, 12 months ago I had a PSMA scan which showed a met on my right scapula. Can’t say it has bothered me and I have continued playing golf twice a week ever since.

Gotta hate those wet bunkers. My course is in great condition, but the bunkers have always been suspect, so much so, that in real wet weather they declare all bunkers out of play.

I am also struggling at the moment with a painful hip. Not convinced it has anything to do with my PCa as last PSA was only 1.3. That was 6 weeks ago. However this pain has arrived very quickly, stopping me from walking more than 100 yards. A month ago I was walking 3 miles every day. Very frustrating, but still playing golf albeit in a cart for the time being.

Will ask the Onco for a CT scan when I see him in 2 weeks. Depending on next PSA read, may also be time for another PSMA scan

Hope T12 is quickly fixed.

Chas

[Jackpine in reply to Chask]

Chase,

I hope you can get relief for the hip and get back to walking again. I know my course is in beautiful condition right now and it’s painful to drive past knowing I can’t play anymore this year. I just need to get the back fixed and look forward to next summers golf.

Good golfing moving forward!

[Grumpyswife]

Thank you for keeping us informed. Glad to hear you’re enjoying life while pushing back disease progression.

[middlejoel]

Was it a green side bunker? did you get up and down?

[Jackpine in reply to middlejoel]

Fairway bunker but I did manage a bogy. Love to golf but is harder with our favorite friend but I refuse to let it stop me from golfing.

[westof]

Hmm... I remember that Lee Trevino was struck by lightning at the Western Open in 1975 ( brothers we have been struck by a different type of lightning!).

After the fact he proclaimed:

"You can talk to a fade but a hook won't listen." "If you are caught on a golf course during a storm and are afraid of lightning, hold up a 1-iron. Not even God can hit a 1-iron."

Lets hold our fists up and pray to God so that we can beat this thing!

I do have a 1 iron in my bag, only for chipping.

Best

[j-o-h-n]

Some people claim that Hitler was a great golfer.....

cause he got out of a bunker with one shot.....

FORE!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 10/12/2019 7:17 PM DST

[J_Monacello]

Jackpine - Your cancer seems unusually aggressive for a G7. Have you ever had your tumor sequenced for actionable mutations? If not, it may offer new treatment options for you.

[Jackpine in reply to J_Monacello]

J_Monacello,

I have not done the gene sequencing but you are correct I need to have that done. Thank you for bringing that option to my attention.