2019 Rollercoaster

[Jackpine]

As we close out 2019 and I start my 6th year with this disease I want to thank all on this website for the collective support, knowledge and wisdom regarding our challenges in dealing with this disease.

I started 2019 with high hopes that LU177 would give me months of disease progression as my PSA was 110 and dropped to 0.43 with six infusions ( PSA started to creep up after 4th injection). 4 months later scans showed a left anterior rib was fully involved as well as spots on my right hip. Treated with with fractions of SBRT. Next scans showed a cracked T12 vertebra which was treated with vertebroplasty, and again go on my merry way. Nov. comes and scans show new involvement in lymph nodes near my lungs so back in to chemo.

2019 took its toll on me but I was able to play golf, go on my fishing trips, take pontoon rides and walks with my wonderful wife. Moving to 2020 I hope hope my genetic testing gives us some new treatments and I will walk my youngest daughter down the aisle next October.

This disease attacks us from all angles and changes our bodies, mind, spirit and so many of our personnel relationships. Know our family and friends are pulling for us and this dragon will be slayed some day.

[greatjohn]

as I started my "journey" in Jan/February of the same year, I can also say it's been a crazy 6 years. I started out with Gleason 6 and doctors saying that the Radiation was 99 % going to fix everything. WRONG WRONG WRONG...after that we pretty much correspond. I keep hoping each treatment will keep my PSA down ....mine only went as low as 0.83 for a brief (happy) moment before it started back up again....that was after Chemo, Provenge, Lupron, and starting Xtandi. It's now back up in the 5.0 (ISH) range. Did drop from 5.34 down to 3.94 on my last test.....with no additional treatments added...so hoping for some new direction....

as I hope for you. Out of the blue, this thing can take a new direction in a good way! Here's hoping. And here's hoping for a GREAT, Healthy (all things considered-ATC) and Happy New Year!

[Jackpine in reply to greatjohn]

Great John,

I know having a 4+3=7 at the start I had myself convinced after surgery I’d be as good as new, like you wrong! I did hit 0.21 but that was right after surgery. I done a ton of radiation but no benefit.

I’ve had people tell me prostate cancer is a good cancer but this is anything but good. So many people have no idea how many men this disease destroys. I like your idea of doing a march to raise awareness!!

[StayingOptimistic in reply to greatjohn]

John, does the drop from 5 to 3 happned after you started the fenbendazole?

[greatjohn in reply to StayingOptimistic]

Yes it did...but I've been off now for a few months. Waiting for back order now.

[StayingOptimistic in reply to greatjohn]

Wow, this is great news. I took it initially for 6 days straight to kick start things when I first started then got stomache issues so I totally stopped now for about 10 days, I am aware of the 3/4 days routine. I am afraid to go back on it but I want to.

[greatjohn in reply to StayingOptimistic]

I go for more testing (PSA and Axumin PET scan) in just a couple of weeks...can't wait to see what the "score" is then. Hoping for a happy downward progression.

[StayingOptimistic in reply to greatjohn]

Wish you lots of luck and great results with both tests.

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Did you see this post from a few days ago?

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[j-o-h-n]

Invite me to the wedding?

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 12/31/2019 7:00 PM EST