Trial Decision Time : After reviewing... - Advanced Prostate...

Advanced Prostate Cancer

22,370 members28,134 posts

Trial Decision Time

Javelin18 profile image
21 Replies

After reviewing the consent forms for the PSCA targeted CAR-T trial at City of Hope, I've decided to join the trial. Here's the trial description:

clinicaltrials.gov/ct2/show...

I chose this because I like the idea of having a living therapy that will remain active in my system. Later on it can be used with other therapies. They have already used checkpoint inhibitors to reactivate CAR-T cells in multiple myeloma.

I've seen some posts that talk about trials ad the next therapy after using up SOC options. I'm fully behind trials,, since that is the only rational way to find a cure. However, trials are different than standard treatment. Reading through the consent forms makes me much more aware that I am what is being tested and experimented on. It appeals to me as a scientist to be an active member in the experiment.

I've been trying to find an analogy for my rapid journey with mCRPC. I think this video of someone jumping off a cliff in a glide suit covers it. I feel like I'm still navigating the slot canyon, and waiting for the end where I get clear air and pop the parachute.

m.youtube.com/watch?v=Rbcbj...

Written by
Javelin18 profile image
Javelin18
To view profiles and participate in discussions please or .
21 Replies
NickJoy profile image
NickJoy

Best of luck to you. Hope it will lead to a cure for you.

Skipper238 profile image
Skipper238

Javelin18, Thank you for participating in this Trial. It looks very promising. Good luck!

noirhole profile image
noirhole

Good Luck! Keep us posted on your progress.

Javelin18 profile image
Javelin18 in reply tonoirhole

I will keep you posted. The first stop is to stain my original biopsy for PSCA expression. Without PSCA expression,,the therapy won't be useful. My understanding is that it is expressed in all healthy and cancerous prostate cells, so I'm expecting to pass that screen

We all thank you for taking this leap of faith. When I participated in 3 trials so far, while also doing SOC treatments, over the past 3 years I always knew it wasn't only about me. I am helping every warrior fighting this disease and looking for viable treatment. If we don't consider clinical trials we may never find a break through therapy for all of us.

We look forward to hearing about your progress. Best of luck to you and all of us.

😃👍

Javelin18 profile image
Javelin18

Thanks for your support. I have more to say about the spiritual aspects of the journey, but don't want to hijack my own post. I'll post something a little further down the road.

Shooter1 profile image
Shooter1

Clinical trials---YEAH

Brysonal profile image
Brysonal

Looks like a great decision. Kudos to you, I will be following and rooting for you and the other trial participants. Thank you for sharing

CAMPSOUPS profile image
CAMPSOUPS

It might sound selfish but I am glad you went with Car-T. I am interested in it. Very much and yes among other things the "live" therapy remaining in us after treatment.

From what I have seen thru your posts your analogy with the glide suit is fitting. I hope very much for success with your treatment. You have been quite the intelligent, working like a dog, PCA student. It's not exclusive to you but none the less I have absorbed info thru your posts as good discussions blossom. Thanks!

Yep, I'm sure you'll keep us posted and thanks again for your dogged pursuit of life extension for yourself in the onslaught of your fast moving PCA.

I am optimistic a good outcome for you is coming with this trial.

Javelin18 profile image
Javelin18

It doesn't sound selfish at all. We're all students of this together. The beauty of this forum is in the shared knowledge.

Tall_Allen profile image
Tall_Allen

Thanks for testing it. Either way, it will help others. Let us know how it goes.

j-o-h-n profile image
j-o-h-n

Remember during your trial.... throw the Javelin.... don't catch it..... Hope good outcome for you...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/12/2022 5:56 PM EST

Faith1111 profile image
Faith1111

Wishing you the best with your decision. I’m excited for you and for others watching you closely as you proceed with this Car T trial. PSMA seems to be a good target as it’s expressed on about 80% of metastatic pc cells. The risk is that these surface markers are also shared with normal tissue. However I know you’ll be watched closely. I’m really interested because my brother was 3 days from leukophorisis when he had to have back surgery due to Mets

The downside is the long wait time while the cells are being re-engineered.

Will be nice to know those New T cells will be attacking soon!!! Go get ‘em!!

Ramp7 profile image
Ramp7

Please keep posting, the Cart T trials seem most promising.

GreenStreet profile image
GreenStreet

Very best wishes for success. I think you have made a good and courageous choice. Hope it goes really well

Javelin18 profile image
Javelin18

Thank you all for your encouragement. It is feeling like an adventure at this point. I'll keep posting as appropriate. I'm also mindful of the scientific value to the researchers, so I don't want to publish before them.

Lowbed profile image
Lowbed in reply toJavelin18

Thank you for sharing your experiences! Very excited about the Cart T trials for PCA! May the force be with you!

MateoBeach profile image
MateoBeach

Clear blue skies to you, and a trusty parachute.

Fightinghard profile image
Fightinghard

Any info if the CAR T might be a future option for those that have already done Provenge?

Looks like the CAR T might be more effective option

Thank you for doing the trial and keeping us informed on your results

Good luck and we all wish you success.

Javelin18 profile image
Javelin18

Provenge and CAR-T both use T cells. to attack the cancer, but use different pathways to do it.

Provege is a dendritic cell vaccine. Dendritic cells are harvested from the patient and externally exposed to a prostate cancer antigen and a cytokine to stimulate them. This causes the dendritic cell to express the cancer antigen. When injected back into the patient, the dendritic cells present the antigen to T cells that then recognize the antigen as a marker for a foreign invader, and attack the cancer that expresses the antigen.

CAR-T directly genetically modifies the T cells to recognize a cancer antigen. In the case of the trial I am joining, T cells are modified to recognize Prostate Stem Cell Antigen (PSCA). The killer T cells attack the cancer.

The difficulty with PCa is that the tumor environment is hostile to the immune system in a way that isn't well understood. CAR-T seems to get around this problem better than Provenge. The evidence of this is the Cytokine Release Syndrome ( CRS) that immediately follows injection of the modified T cells.

CAMPSOUPS profile image
CAMPSOUPS in reply toJavelin18

Thanks again for your presence here. You and TA, Nal, Patrick, Tango, would make a great team. Others too I haven't mentioned are a great help.

This is the type of thing I paste and print so when my pea brain gets lost in the weeds I have something to fall back on.

So well communicated. Thanks again!

Not what you're looking for?

You may also like...

Staying Alive

I heard back from City of Hope that I have strong PSCA expression, and I'm moving forward with the...
Javelin18 profile image

NEPC Targeting

Some responses to my earlier posts suggested I might want to think twice about persueing Lu-PSMA...
Javelin18 profile image

Choosing a trial

My Lu -PSMA therapy hasn't been successful at controlling my cancer. During treatment my PSA and...
Javelin18 profile image

Decision time Lutetium or AM509

M1, five bone lesions, mCRPC with PSA now doubling each month (currently at 1.7), after failure of...
MarkEmrys profile image

My Personal "trial" of Cyclic Testosterone Therapy

I previously posted about my proposed personal experimental "trial" of high dose cyclic...
MateoBeach 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.