STEP ONE OF MY THIRD CLINICAL TRIAL huCAR-T19 IL-18

[steve5441]

With the ink barely dry on my clinical trial consent forms, it was back up to Penn Medicine for my blood collection. First stop was the radiology dept to have a neck catheter installed, I decided against the arm extraction method, as it limits your mobility during the procedure. Cath installation complete it was up to apheresis. Here's where your T cells and other blood products are collected by a small refrigerator sized unit. My wonderful nurse/tech hooked up my two flex lines from my neck to the machine. After a few adjustments she had that centrifuge firing on all cylinders. I was told it would take about five hours to complete, the collection was three and a half hours. They showed me my bag with about a pint of red looking fluid. On to the lab for manufacturing, not quite sure when all of this will take place and then into the hospital for the infusion. I am following Nan as number 4 in the CLL trial. I was so fortunate to have up to date postings on her experience. I'll certainly enjoy any info she may post in the future.

First Trial Loxo-305 Lasted 19 months until I developed a mutation

Second Trial Nurex 2127- same, about 19 months another mutation

Both of the trials were at Sloan Kettering Penn didn't have any trials going on for me after Venclax, so I had the option to travel to Basking Ridge NJ for these two. I started with FCR in 2010 Ibrutinib 2015 Venclax in 2018. So here I am back at Penn 31/2 years later. Being treatment naive in 2009, FCR gave me my longest remission.

[CycleWonder]

Hopefully this trial will work well for you

[steve5441 in reply to CycleWonder]

Thanks for the nice reply.

[Stamphappy]

Thanks for the update, Steve. I've been wondering how you were doing and praying for success. Sending positive thoughts, hugs, and prayers. 💐

[steve5441 in reply to Stamphappy]

I will take all positive thoughts prayers and hugs.

[Pacificview]

Here is to a successfull #4! Rooting 4 you all the way!

[steve5441 in reply to Pacificview]

Thank you so much.

[Agiledog]

Go get ‘em, Steve as you join Nan and the others blazing a trail. Best to you for a great result. Bud

[steve5441 in reply to Agiledog]

Ah, she's doing all the blazing, I'm just following her path, thanks.

[Oleboyredw-uk]

All the very best for you and your trial. Just had my 15 month review and results from by 12 month bmb. Still MRD negative and signs of CAR activity (keeping ALC low).Best, robin

[steve5441 in reply to Oleboyredw-uk]

Wow, that is awesome news. When I get this completed, I hope to get in some significant time markers also.

[nvp815]

Cheering you on Steve!!!! Having the apheresis complete is a big step. I am beyond excited for you. I have such positive feelings about the potential cure this trial holds for us. Sending only the best wishes to you. Three and four are lucky numbers in my opinion 💕💕💕

Warmest regards,

Nan

[steve5441 in reply to nvp815]

Thank you so much for your posts. These updates for the same trial and same Dr are priceless for me.

[thompsonellen2]

Thanks for the update. If you need any help from a local, I live walking distance from Penn. Don't hesitate to reach out.

[steve5441 in reply to thompsonellen2]

Thanks for that offer, this is definitely the sweetest. thing you could do for someone.

[BobbyFour]

Sending positive vibes your way!!!

[steve5441 in reply to BobbyFour]

I accept positive vibes 24/7!!!

[cajunjeff]

I’m sending positive waves your way as well Steve. I hope you will post updates on your progress. I think your can do, positive approach to things, will help a great deal. And I think your informative posts about your cll journey are a great benefit to our cll community here. Jeff

[steve5441 in reply to cajunjeff]

Thanks Jeff, I will continue to post as long as no one gets tired of my writing. I admit. I am not the most knowledgeable person on here about CLL and other medical issues, but I do have a lot of hands on experience.

[Dahlia7]

Good luck Steve. I feel I have been on a parallel treatment track. Keep up the positive vibes. Tony

[steve5441 in reply to Dahlia7]

Thanks Tony, yes same age same treatments so far, this is getting eerily similar my friend. Best of luck to you.

[casanova]

So far behind in responding, sorry. I trust all is going well for you and to be following Nan is great. I hope you have a fabulous response and a long, long remission.

Maureen UK

[Osprey69]

Steve reaching out first regarding update on your trial and how things are at this point. I hope the news is positive and you are feeling good. If you are up to it I am also interested in your thoughts on Nurex trial which you were on for 19 mo. I understand you developed mutation and wondered if could share what that was. I have been on Loxo for 40 mo but numbers are changing and time to move on and am considering Nurex. Thanks Fran

[PCHO in reply to Osprey69]

I am supposed to start loxo or pirtobrutinib and was wondering if anyone else had gotten good results . I have done ibrutinib for 6 years and a comb of obinatuz/ venetaclax 2 year and been off since Jan now more large nodes are back and white count is rising😩

[Osprey69 in reply to PCHO]

As mentioned have been on Loxo for 40 wks very few side effects from drug. Never reached MRD however with my hx and p53 mutation was not a real expectation. As in all good experience. I f you have other specific questions let me know and I will provide my email. Fran