Trialnet HOKT3---need advice from others who have used this for prevention

By Al4540 Latest Reply 2013-02-15 22:46:34 -0600
Started 2013-02-09 10:38:13 -0600

My child showed positive autoantibodies for Type 1 and we are one eligible to join the HOKT3 trial to prevent progression of full blown Type 1. I am eager to hear from others about their (or a family member/close friend's) experiences with this trial:
How did you decide to enter this trial?
Were you able to talk to another patient or family member who had gone before you?
Are you happy about results and why?
What did you ask the investigators before entering?
Do you feel more hopeful about research and clinical trials through your experience?
Would you recommend others like you consider this trial?
and the prevention drug.
By the way, I learned that this Trial needs more patients to enroll or it could close forever. This is the most promising T1 prevention tool found so far.
Please let me hear from you!

1 reply

Lisa Altman
Lisa Altman 2013-02-15 22:46:34 -0600 Report

Hi, so sorry it took me a while to respond, was out of town and just had the chance to read your message. My son Andy was diagnosed with type one when he was 13 and we had the chance to participate in the Anti-CD3 trial (HOKT3) shortly after his diagnosis. We decided to do it even though he had already been diagnosed, because we were hoping it would halt the progression of the disease for him so he would be in the "honeymoon" for a much longer time, and also we knew that it would help scientists get closer to a real cure. Participating also made us feel like we were doing absolutely everything possible that we could do to help our son. And no, we didn't have anyone else to talk to about it before we joined it, but the doctors spent a lot of time with us, and even separately with Andy to make sure he was really ok with it. It was scary, but he bravely did it and was amazing throughout. It required lots of trips back and forth to San Fran (we live in SD), but they tried to make it as easy as possible for us.

Our main concerns and questions before the trial revolved around the actual logistics and blood draws he would have to endure. I wanted him to know EXACTLY what would be happening and if he thought it was just too much, he knew he could say no. Also, I wanted to understand the risks, especially right after the initial treatment with the drug when his immune system would be compromised temporarily. We worried about sending him back to school and what would happen if he caught a simple cold or flu. But NOTHING ever happened like that, and his immune system came back very quickly. In fact, we had a great experience…he doesn't react like a "normal" diabetic…his diabetes is not as unpredictable as most seem to have. His A1C's are practically normal for a non-diabetic. He doesn't seem to have the severe highs and lows that make diabetes so difficult. To be honest though, the affects of the trial should be long gone, yet he still produces significant amounts of C-peptide, indicating that he is still making some of his own insulin. I don't know if this is really the result of the trial, or if it's just the way his body has dealt with diabetes. But I want to believe that anti-CD3 did this for him! It didn't cure him, and we knew it wouldn't, but if I were in your shoes, and I could actually delay or prevent the onset of type 1, I would do it in a heartbeat! Any amount of life you can save from type 1 is worth it. We have a daughter who was antibody positive at 6 years old…way before our son was diagnosed. But back then the anti-CD3 trial wasn't available for those at risk for developing type 1, it was only available to newly diagnosed. We were lucky that she wasn't diagnosed until she was 17, but if we could have joined the study and prevented it even longer we would have!

I am wondering how old your son or daughter is…
Feel free to write back…I am happy to share.