2019 Rollercoaster: As we close out... - Advanced Prostate...

Advanced Prostate Cancer

22,290 members27,988 posts

2019 Rollercoaster

Jackpine profile image
9 Replies

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.

Written by
Jackpine profile image
Jackpine
To view profiles and participate in discussions please or .
Read more about...
9 Replies
greatjohn profile image
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 profile image
Jackpine in reply togreatjohn

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 profile image
StayingOptimistic in reply togreatjohn

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

greatjohn profile image
greatjohn in reply toStayingOptimistic

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

StayingOptimistic profile image
StayingOptimistic in reply togreatjohn

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 profile image
greatjohn in reply toStayingOptimistic

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 profile image
StayingOptimistic in reply togreatjohn

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

Did you see this post from a few days ago?

healthunlocked.com/advanced...

j-o-h-n profile image
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

Not what you're looking for?

You may also like...

Abiraterone failing...Xtandi next best step?

This is my first post. I've been reading and following so many of you since September. The...
Yadifan profile image

SOC is working for me - so far anyway.

I’m 77 and first diagnosed in July 2018 as Stage 4 Gleason 8 PCa with widespread metastases. I had...
Bjry profile image

Update after LU 177 PSMA

I haven’t posted in a While wanted to give and update on dealing with this crazy disease. After...
Jackpine profile image

Pluvicto rechallenge failed

Husband successfully had Lut-177 in 2019 with the vision trial. This June he was fortunately...
CJ4J profile image

Great Results after 18 months of Treatments

Hello Everyone, I am reading this forum every day and getting very valuable information. Thank you...
Pheart2 profile image

Moderation team

Bethishere profile image
BethishereAdministrator
Number6 profile image
Number6Administrator
Darryl profile image
DarrylPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.