WHEN YOUR CLINICAL TRIAL FAILS, WHAT DO YOU DO NEXT ?

[steve5441]

Except for a monthly neulasta injection, my Nurex 2127 trial had been going pretty well. My blood counts were good, 13ish HGB 1,80 ALC 150 Plat ANC was always low. My Dr. thought it would be idea to do an 18 month " lets see where we are BMB", no problem. I hadn't had one in about 20 months, I kinda missed those fun little tests and chewing up another leather belt. WHOA ! 65% malignant B-Cell population, been down this road before. Total surprise for my Dr. and me. I was actually feeling a bit cocky before my results. Seems like the Nurex was scrubbing the easy to get blood but leaving the tough stuff for someone else. We discussed next trial options, there were 4 to choose from at the time, but come time to choose there was only 2 available and 1 was a CAR-T trial in NYC, that was a non-starter. When we returned home from MSK, I checked the Penn Medicine trial website. Wow, a new CAR-T trial available for CLL and the lead investigator was Dr. Svoboda, my former doc at Penn. In 4 days I had an appointment, 2 weeks later I signed on the dotted line, 2 weeks later I had my apheresis This was all great EXCEPT FOR , failing trial, dropping blood counts and possibly months before treatment. This all happened in June , I was getting very anemic by the end of June, so much so I was spending half of the day on the couch. My CLL was taking over, weight loss, night sweats, aches, no appetite all of the usual symptoms. On July 3rd, my last appointment at MSK, My HGB was 7.8 and I was misarable. Dr. Thompson called Penn to set an appointment for a blood transfusion. July 5th I had my first ever blood transfusion. It helped a bit but was not the solution. Dr. Svoboda was now in charge of my care , a plan to use Gazyva and a few more transfusions got me through the end of July and August. FINALLY,I got the call for Sept 14th start for my CAR-T treatment. My bridging treatment consisted of 4 transfusions and 3 full Gazyva infusions, this got me to the start in somewhat reasonable condition. I actually started getting a response to the Gazyva infusions, my HGB jumped to 11.8 and platlets 160. It wasn't funny at the time, but my first starter dose of Obinutuzumab was a fiasco. My CNP was just telling me about the possible side effects as we were getting started on the infusion, chills, fever, sweats etc; should take about 5 hours as it is a slow process. Heck! it didn't take any time at all, 31 minutes in and I had the rigors. I had these once before during a rituximab ramp up. The nurses came to my rescue , I was wrapped up tighter than the Mummy with blankets, finally a small shot of dilaudid got the job done. I'm sorry for such a long post, but it was 5 months since my BMB until the time of my CAR-T, a lot happened in that time, tough descisions, treatments and now recovery. I went into the hospital 9- 14 and was released 10-2-2023. I'll write an update after I visit my Dr, next week.

[Justasheet1]

Steve,

Thanks for the “long post”. You are going through what many of us imagine could be us eventually.

I had high hopes for that BTK degrader.

I’m wishing you great results to report on your journey.

Jeff

[steve5441 in reply to Justasheet1]

Thanks Jeff, there is still research being done on degraders. I can't complain, 20 months put me 1 step closer to CAR-T.

[HopeME]

Hi Steve:

Thanks for taking the time to post about your experience. It must feel great to be home. You have been through some difficult times but you maintain a keen sense of humor. I hope the Car-T is curative for you! Please keep us posted.

Best,

Mark

[steve5441 in reply to HopeME]

Thanks Mark, it is great to be home and I am really enjoying it.

[hope-73]

Wow, you’ve been through a lot. I hope you are feeling better and that you’ll get great news at the next visit.

[steve5441 in reply to hope-73]

Thank you so much for your comment and I am slowly getting better.

[Stamphappy]

Steve, I've sure been wondering how things were going for you. I'm sorry to hear Nurex 2127 did not bring better results. I had high hopes for that 😔. I'll continue to follow your progress and pray for cure for us all. Thank you, so very much, for participating and sharing your trial experiences. Wishing you all the very very best. Have faith. I'm looking forward to your next post. 🫂

[steve5441 in reply to Stamphappy]

Thank you so much. I look at the Nurex trial as a success, with this and the Loxo trial, I strung together three and a half years which put me in line for the CAR-T. Lots have happened in CLL research in that time, and lots more is still to come.

[Stamphappy in reply to steve5441]

Yes, Steve, lots more IS still to come. 😊

[jonathan7176 in reply to steve5441]

Good luck with CAR-T. Hopefully some of the other nx/nrx trials will be more effective.

[nvp815]

Hi Steve,

I have been thinking about you! I didn’t realize you had been through so much leading up to CAR-T. Hoping your weeks as an inpatient at UPenn during the trial went as smoothly as possible. Looking forward to your update when you are feeling up to it.

All the best,

Nan

[steve5441 in reply to nvp815]

Thanks Nan, going to Penn tomorrow to see Dr. Svoboda. I was actually # 5 CLL patient and # 21 overall.

[nvp815 in reply to steve5441]

I was originally supposed to be CLL patient #5 until I got moved up. Good luck at your appointment!! I see him in two weeks (also on a Monday). Hope you are feeling stronger each day.

[CLLCalifornia-USA]

I’m sure there’s no place like home. Glad you have kept your keen sense of humor throughout your journey. Keep us updated on your next doctor visit. Stay strong. Sally🙏

[steve5441 in reply to CLLCalifornia-USA]

Thanks Sally, yes my home is wonderful and I am enjoying every minute.

[Osprey69]

Wow Steve that is a journey that is made up of hard decisions and lots of determination! Certainly hope you are feeling better and Dr vs goes well- will be looking for your update as you feel up to it. I feel I am almost feellike your shadow first Loxo and now considering Nurix. CLL really is a journey. Fran

[steve5441 in reply to Osprey69]

Fran, my shadow, when you can string together a couple of 4 year successful treatments, there will always be another option.

[The-Man-with-a-Plan]

DUDE!

You've been through the mill! Hope the CAR-T process is the 'charm' for you.

MwaP

[steve5441 in reply to The-Man-with-a-Plan]

I love the screen name. Thanks I need a few Lucky Charms.

[Jm954 Administrator]

I hope CAR-T gives you the remission that you need, you've been though enough already

[Justasheet1 in reply to Jm954]

And so have you Jackie 😉

Jeff

[steve5441 in reply to Jm954]

Thanks Jackie, Heck with FCR and now a CAR-T in the bag, everything else later will be a piece of cake.

[Jm954 Administrator in reply to steve5441]

I hope so for you x

[Dinasantos]

🙏🙏🙏

[bachplayer13]

thanks so much for sharing your experience. Best of luck going forward!

[steve5441 in reply to bachplayer13]

Thank you so much.

[BobbyFour]

Thanks for the post, wow, you have been through a lot! Sending prayers your way that the CAR-T is a ‘home run’!

[steve5441 in reply to BobbyFour]

Thanks Bobby, I'll be happy with a triple.

[Ballyhoo777]

🙏

[Teemed]

I wish you well and send prayers to you and your team