My PSCA CAR-T Journey : Here's an... - Advanced Prostate...

Advanced Prostate Cancer

21,056 members26,262 posts

My PSCA CAR-T Journey

Javelin18 profile image
18 Replies

Here's an update on my experience with the CAR-T trial at City of Hope. I got lymphodepletion chemotherapy Wednesday through Friday of las week, then wen home. I checked into the hospital on July 4, and got the T cells the evening of July 5.

I haven't had any Cytokine Release Syndrome ( CRS) reaction yet. In their experience, happens 2-3 days after receiving the cells. I'm anxiously awaiting the start of that. On the one hand, I don't want to go through the reaction, but on the other hand CRS shows that the therapy is working.

I learned something interesting. My PSA went down by 1/3. from the lymphodepletion. It does something to the immune microenvironment that knocks back the cancer. I think this is an area of research that needs to be explored more.

Written by
Javelin18 profile image
Javelin18
To view profiles and participate in discussions please or .
Read more about...
18 Replies
DesertDaisy profile image
DesertDaisy

Thank you for the update. Praying this is successful for you.

Dwight's wife, Kay

Tall_Allen profile image
Tall_Allen

Do they give you an antihistamine to counter the cytokines? You are right that the immune system also protects the cancer and we need to figure out how to stop that effect.

Javelin18 profile image
Javelin18 in reply to Tall_Allen

I know that there's a treatment to counter the cytokines, but I'm not sure if it's an antihistamine. I'll ask the doctor next time they make rounds.

CAMPSOUPS profile image
CAMPSOUPS

Hey brother Javelin. I sound like a broken record but again I am glad you got into this trial and I am guardedly (I should leave out the word guardedly but you and us here know nothing is guaranteed) optimistic that this will finally give you some breathing room from the aggressive fast moving PC you have delt with.

Mine is on the move again. I got 11 months out of chemo and now 12 months into Zytiga it looks sure my ride on it has ended. I will do the prednisone to dexamethasone switch with Zytiga and hopefully get a few more months on the Zytiga. Reality is it won't be long and I will be looking at some of the end treatments. Maybe a chemo re-challenge then Xtandi.

Other options as well of course.

Javelin18 profile image
Javelin18 in reply to CAMPSOUPS

Thanks for the encouragement. The doctor is very optimistic about my outlook with the trial. I'm the first to get two 100M doses close together , and she is expecting that will work better.

Glad to hear your getting relatively long rides from your SOC treatments.

CAMPSOUPS profile image
CAMPSOUPS in reply to Javelin18

Dr. Dorf correct?Glad to hear a detail like that. Doses close together and Dr's optimism.

Yea I have for awhile now been enthused with the Car-t work and glad you got in the trial. You have had an intense ride in a short period of time.

Javelin18 profile image
Javelin18 in reply to CAMPSOUPS

Yes, Dr Dorff is leading the trial. I'm lucky to live close to the Los Angeles area, with so many great medical centers.

tango65 profile image
tango65

CRS is caused by the release of interleukines, mainly IL-6 , tumor necrosis factor etc.etc. There are specific drugs such as tocilizumab a IL-6 receptor blocker which may be used to control the cytokine storm.

Javelin18 profile image
Javelin18 in reply to tango65

Thanks, that was my recollection, but it's been a while since I looked into it.

tango65 profile image
tango65

I believe it is a very effective drug to control the CRS and they may not need to use steroids.

I wish you the best of luck with the treatment.

slpdvmmd profile image
slpdvmmd

Stay strong. Thinking positive thoughts.

Scout4answers profile image
Scout4answers

Hope you have a great outcome. Thanks for sharing your story.

Seasid profile image
Seasid

I wish you all the best. István

andrew61 profile image
andrew61

It was day 9 when I started to have CAR-T CRS symptoms. So far all they have given me is Tylenol for the fever and intravenous antibiotics just in case it’s an infection and not CRS.

Faith1111 profile image
Faith1111

Thanks for the update. I am so optimistic for you! Think big. Praying for remission

PGDuan profile image
PGDuan

Thanks for the update on this promising treatment path -- sending good vibes. Dr. Dorff and team are super so you're in good hands.

Cynthgob profile image
Cynthgob

Car-t

swwags profile image
swwags

I'm watching this thread and hoping good things for you brother.

You may also like...

my CAR-T experience

the City of Hope Phase I CAR-T trial. Here's my experience with it. I got my infusion of cells...

Waiting to get my infusion of CAR-T

infusion of CAR-T. They extracted my cells 6 weeks ago. While waiting, my PSA ran amuck. Went...

my journey

went to Doc for cholesterol ended up with a PSA test PSA 54 Gleeson of 9, went right over my head,...

My Journey

My most recent imaging and bloodwork show both my psa and mets undetectable.

Early results for City of Hope CAR-T

allows them to control cystitis snd Cytokine Release Syndrome (CRS).