hu CAR-T 19 IL-18 4th Generation Clinical Trial 90 Day Check-up With All of My Favorite Tests

[steve5441]

It's been a long time since I have received a MRD negative diagnosis, 13 years to be exact, after my FCR treatment. All of the other treatments didn't require a BMB to confirm a negative reading, I had a few remissions, but they were just on paper. My blood counts were good, and I felt fine, but a relapse always followed. The 90-day BMB, CT scans and a Flow Cytometry, confirmed that I was CLL free. I had already received a negative result just 14 days after my CAR-T infusion, but that can be skewed a bit due to the two Bendamstine infusions you receive upon your arrival at the hospital. So the three-month testing tells the real story. My blood counts are good at; HGB 14.6 WBC 3.9 ALC .80 ANC 1.9, my fibrinogen level, which was giving me problems, is now normal. My IgG level has dropped, and I will be tested for that with my routine blood work, plus my anti viral drugs are going to be part of my diet for a bit. My BMB was done under sedation. I was a bit disappointed that the drug used to put me out didn't give me that semi- conscious euphoric feeling, like you are suspended in time and space. Nope, they just put me asleep straight away, don't remember a thing. After 10 weeks out of the hospital I have almost returned to normal, been to the gym several times, I've returned to my uplifting part time job at a local funeral home, with a mask of course. My wife and I have nothing but praise for the brilliant researchers, doctors, nurses and the entire staff at Penn Medicine. Without their vision we would not be this well off in the cancer fight. If anyone is considering a CAR-T treatment at Penn for themselves, relative, friend and needs some current firsthand info, do not hesitate to contact me or Nan on this site. We would both be very happy to answer any questions or concerns you may have. I myself used Nan's post on here to help make my decision on this procedure. Oh, and we got meet Nancy and her husband at Penn a few weeks back in the waiting room at Penn. Such a pleasure to meet a fellow trial patient. Nan was CLL patient #3 and I was #5 in this trial. And one other thing before my fingers totally cramp up, "we" are not the only ones to get Cll. My Doctor who performed my latest BMB, informed me that he also had CLL, FCR in 2013 then V + O in 2018, now in remission. He also has 11q del, TP-53, unmutated, so he is keeping an eye on all of the trials going on just in case.

[Justasheet1]

Steve,

Awesome news! I’m so happy to read your post!!!

Jeff

[Agiledog in reply to Justasheet1]

Superb Steve! You and your cohorts are the trial balloons for those of us traveling the same path. I’m in 3rd tx, FCR>trial acala>now BRUIN trial on R+V. Fingers crossed, and ever so grateful for informed trailblazers like you. Many thanks and wishing you many great miles ahead! Keep the good news coming! Best, Bud

[Agiledog in reply to Justasheet1]

Oops! Sorry. Meant reply for Steve5441.

Bud

[steve5441 in reply to Agiledog]

Bud, sure hope you are doing well, thanks for the interest.

[steve5441 in reply to Justasheet1]

Thank you Jeff, I hope you are doing well also.

[LeoPa]

I bet your doctor is really knowledgeable then which is good for you! There is nothing like having a skin in the game.

[steve5441 in reply to LeoPa]

Yes it is, thanks.

[nvp815]

Steve,

Your remission is truly the best gift this holiday season for you, your wife, your family, and friends (old and new). I am beyond thrilled for you. There is a wonderful sense of comfort having someone with whom to share this journey that only a few others have experienced. I am so grateful for your friendship and look forward to future meetings at Penn

All the best,

Nan

[steve5441 in reply to nvp815]

Thanks Nancy, not sure when I am going back to Penn, maybe next month. This is the best I've felt in months, I still have to take the three anti-virals almost daily, but no big deal. I did get a covid shot yesterday and need to fit in a RSV and Prevnar. Have a wonderful holiday season.

[nvp815 in reply to steve5441]

Hey Steve, Glad you got the new covid shot. I also had RSV and Prevnar 20 vaccines. Other than a sore arm, I had no side effects from any of them. I spread mine out as well, at least two weeks between them. I am still on antivirals too...as you said, not a big deal. I will be back to Penn on 1/3/24 and again on 2/12/24 to see Dr. Svoboda. Wishing you a lovely holiday season

[Ghounds]

Such wonderful news Steve, the best Christmas present you could have wished for. I hope you enjoy a long and healthy remission.

[steve5441 in reply to Ghounds]

Thanks so much, this is the best gift possible.

[Osprey69]

👏👏👏 a wonderful holiday present after all your hard work and your wife too. Enjoy the New Year ! Still trying to work out a plan 🥺. Fran

[steve5441 in reply to Osprey69]

Thanks Fran, I am sure you and your docs will work out a wonderful plan. Soon I hope.

[neurodervish]

Thank you Steve and Nan (nvp815 ) for blazing this trail/trial and sharing your journeys. Wishing you both the very best!

[steve5441 in reply to neurodervish]

Thanks for taking the time to read my post and leave a nice comment.

[Poodle2]

Fantastic news, so happy for you and also nvp815 . Enjoy!!!

[steve5441 in reply to Poodle2]

Thanks, and the best of luck on your journey also.

[Stamphappy]

This is amazing and happy news! I'm thrilled for you, your family, Nan's. Your news is a Christmas gift to us all in this season of miracles. Thank you for your trial participation and sharing your wonderful news!

[steve5441 in reply to Stamphappy]

Speaking for myself and Nan, we are both happy to participate in these important trials. Thanks