60 DAYS IN, QUICK UPDATE ON TODAY'S DR VISIT huCAR-T 19 IL-18 4th GENERATION CLINICAL TRIAL

[steve5441]

60 days have gone by since I received my new T- Cells. I have been neutropenic, average ANC of about 1.0 for the last 2 months and my Fibrinogen levels have been consistently low. I have had to do twice weekly blood checks at Penn Medicine, and most of those tests have resulted in a CRYO infusion and a shot of Neulasta. That all changed last week when things stabilized, and I didn't require any extra blood boosting products. Today almost all of my blood work was normal, ANC 2.4 up from 1.7, Fibrinogen jumped from 169 to 245, WBC is good at 4.3 and my HGB has been trending at 13, but has jumped to 14.2 for the last 2 tests, platelets are slowly increasing and sit at 130. All of my other counts have been good. One important thing is that I regained almost 15 lbs, all muscle of course. and any digestive issues are long gone. Energy levels are getting better by the week, and I have a bunch of the around the house job list checked off. We even walked the 2+ block route from the parking garage to the Perelman Center and back. First time in about 5 months, not for the exercise, but to save $5 you know. My blood testing is now going to be once a week, if it continues to stay stable, even less frequent. I do have an appointment for next Monday, 11-20-23 and while there, I'm going to try and bump into NAN #3, she might be there also for her checkup. She was #3 CLL patient for this trial and I am #5. It would be nice to meet a fellow trial participant from the area, it would be like two legends meeting for the first time. Next is a 90 day follow up with CT scans and my all-time favorite test, the BMB. This one is going to be a bit disappointing since it's going to be under sedation, and I had just bought some used belts from Goodwill to knawel on if it wasn't.

[cajunjeff]

Wow Steve, what an encouraging update! Pretty much normal labs. Thats really great, keep the updates coming. It feels like they are getting better and better with CarT, no doubt thanks to people like you joining these trials and to some amazing medical and research folks running the trials. 👍

[steve5441 in reply to cajunjeff]

Hey thanks Jeff, yes, the doctors and researchers are amazing, and they can make decisions on the fly. One thing I have thought about is the cost of the studies and what will the cost of treatment be if they get FDA approval. Penn seems to be a driving force for these CAR-T trials, while I was in hospital, they just started a study for adult ALL. This 4th gen trial I am on also includes NHL and DLBCL. I do think this CAR-T is getting better, especially for our CLL. You take care of yourself too.

[Walkingtall62]

Thanks for doing this trial. Amazing

[steve5441 in reply to Walkingtall62]

Thank you and it's been my pleasure to help out. Hopefully it will someday help many patients.

[nvp815]

Awesome update Steve! So glad everything is trending in the right direction. Yes, I will be there on Monday 11/20. I will be arriving around 11:30 for my 12:00 appointment. I will carry a little #3 sign to identify myself. It would be so wonderful to meet you.

Nan

[steve5441 in reply to nvp815]

Hey #3, I have an appointment at 10:30 or so for lab work level 4. Jim Gardner is coming out of retirement with Vernon Odom to do an Action News Channel 6 special report on this event. I will be there unless something crazy happens, this week now will be the first time we haven't been to Perelman twice in one week.

[nvp815 in reply to steve5441]

Haha!! I will make sure to touch up my makeup if Action News will be filming!!! You deserve the break from the twice weekly visits…it is a lot. Looking forward to seeing you if it all works out. 👍🏻😊

[Panz]

Steve, this just wonderful news and thank you for sharing!!! I would say this Thanksgiving you have much to be thankful for.

You are you know the best medicine you have with that the positive attitude you have going for you! Not always easy but a VERY IMPORTANT thing!

Thanks for being you and keep the update coming!

Panz 👍💕🙏🙂🦃🌻☔️

[steve5441 in reply to Panz]

Panz, thank you for commenting. I am thankful every day of my life for all of the wonderful care I have received. I have been so fortunate to have been given world class care for every phase of this journey, and I continue to get it. Best of luck to you also.

[Justasheet1]

Steve,

You are inspiring us as well as Nan nvp815

Jeff

[Thundercat2]

Wow, so impressive. Your sense of humor is an inspiration after all you have been through. Many thanks for being the "lab rat." Sending huge best wishes to both of you. How exciting to get to meet one another.

[steve5441 in reply to Thundercat2]

Thundercat, thanks for the comment, I usually find humor in about everything. Sometimes finding anything funny in the cancer ward is difficult, but I always make it about me, and that makes it OK. I just hope that if I get an opportunity to meet #3 she doesn't pretend she doesn't know who I am, I told her I'll be the one in the yellow mask.

[neurodervish]

That's wonderful news! Thank you for sharing your journey. The cost of groundbreaking medical treatment (on top of everything else) is often snarling traffic and overpriced parking. Still, it seems well worth it, especially if you can get sedated for a BMB and don't have to gnaw thru an old belt! 😀

[steve5441 in reply to neurodervish]

Thanks for the comments, I share as much of my CLL information as I can. I have learned so much about this disease on CLL Support, plus, I've had plenty of hands-on experience. I even learned how to chew on an old leather belt or shoe for anxiety during a BMB, if it gets painful, I just start barking.

[neurodervish in reply to steve5441]

LOL, you're a very entertaining writer. If you had a substack, I'd follow it! 😀😀

[Poodle2]

Steve, this is an amazing update! Thrilled for you, your numbers are looking great!!!🎊

[steve5441 in reply to Poodle2]

Thank you for the nice comment. And best of luck to you also.

[Me2AsWell]

Congrats and thanks - you and the Penn team are trail-blazing for all of us., and I for one am very grateful.

[steve5441 in reply to Me2AsWell]

Ah thanks, the Penn team is an amazing unit and never disappoints.

[Bud129]

Hello Steve

I’m right there with you (at Penn) and within days of your CAR-T start though I’m a Richters transform patient (del TP53, etc) that started with CLL/SLL. All my numbers are very similar to yours (45+ days), weight gain, and my energy levels perc’d up even after being bed ridden in the hospital from Feb/March to August/Sept.

I’ll write about my journey at some point but I’m still mentally healing ( it feels like PTSD). I was the first (or one of them) to received Epkinly prior to CAR-T at Penn as it became my life saving medicine though I hit every side effect in July.

Ring the bell when you get to remission ( or cured) as you seem to be close. I will during my next visit.

Also keep the faith as the doctors and nurses are some of the best worldwide. They never gave up on me and used all resources and means necessary in the US and Europe and finding EPKINLY shows this at Penn for me. My family caregivers ( wife and sons & fiancés) also continually fought for me in and out of the hospital which was crucial during my journey.

All, we are winning this fight and the medical community is spreading the knowledge as fast as they can to deal with the drugs and processes to control and cure cancers. It is never fast enough though- right?

Note: my first doctor (CLL/SLL) at Penn moved to University of Vermont to open a CAR-T facility; Dr. Gerson. Dr. Nasta saw my Richters (DLBCL) through from the beginning of the event.

[steve5441 in reply to Bud129]

Bud, I hope you can someday write about your amazing journey. I am totally amazed and impressed with what you have been through and the great results you have achieved so far. I love Penn Medicine and all of the research they have done on these treatments. I am so glad that RT is being included in this trial and you were in a great place for this to happen. We will both get to ring that big old bell soon, I'm going to hit it just like they used to do on "The Gong Show" when they axed a contestant. BING - BONG, best of luck to you and your caregivers.

[Fastbike14]

Great to hear your good news, long may it continue. Like your BMB sense of humour!!

[steve5441 in reply to Fastbike14]

Thanks for your comments, after having double digit BMB's I always take a humorous approach anymore.

[BeckyLUSA]

Great news!

[steve5441 in reply to BeckyLUSA]

Thanks Becky

[Stamphappy]

This is all so amazing. Thank you all so much for sharing such promising news! 😊

[steve5441 in reply to Stamphappy]

It is amazing, and we can all give thanks to the ultra-amazing doctors and researchers.

[Stamphappy]

❤️ and all the brave hopeful people like you.

[steve5441 in reply to Stamphappy]

Thanks so much for commenting.

[spi3]

FANTASTIC NEWS! Congratulations on getting stronger and healthier! Thank you so much for being a,pioneer for so many of us and for those folks in the future-,God bless you and my prayers are also with you! WHOOP-WHOOP

[steve5441 in reply to spi3]

Thank you very much. I do feel like a pioneer, we have been traveling to the hospital in our covered wagon. 😀

[spi3 in reply to steve5441]

Please remember your also a,true,and brave warrior for us all

[Osprey69]

Steve what great news-you are definitely a pioneer in the journey of treatment in CLL you deserve all the best! Penn medicine is great and experienced it first hand in those days of Dr Mato. Enjoy the holiday with family and great results.👏 Fran

[steve5441]

Thanks Fran and I hope you are getting things sorted out.

[SeymourB]

Steve -

Thank you SO much for doing these trials and posting your experiences. We benefit in so many ways from your experience. I know it's been a bumpy adventure, and you did not have many alternatives anyway. But you communicate so well.

=seymour=

[steve5441 in reply to SeymourB]

Thanks Seymore, I had a few other options for treatment, but they weren't to my liking. Best of luck with your trial too, it looks to have all of the bases covered.