I finally got my first dose of the GNKG168 drug (the first of two clinical trials in my treatment plan)! As you may recall from last week’s update, I was supposed to start yesterday (Monday). On Sunday afternoon, we got a call telling us not to come in Monday because the insurance was not going to cover the trial and Hopkins was appealing that decision but they didn’t know how long it would take to resolve. Now we know that our insurance doesn’t cover phase 1 or phase 2 clinical trials. I’m guessing a lot of plans don’t (but most people never need to find out) because our insurance seems great overall but the big point here is that my entire treatment plan right now consists of clinical trials. The first, GNKG168, is phase 1 and the second, the CAR-tcell therapy, is phase 1 or 2 depending on the study; there are over 100 around the country. There’s a nice man who we are now referring to as Uncle Ted who is in charge of the money for the children’s center at Hopkins and decides when not to charge for things that insurance won’t cover. The study pays for the medicines, but Hopkins has agreed to cover the lab/clinic expenses. Thank you Ted, for allowing me to start treatment today without waiting for the insurance appeal to go through. If it goes though, that would be great, but if not, we are incredibly grateful. I didn’t go to Hopkins until this afternoon for the GNKG168 drug because it had to be delivered and then defrosted. They didn’t end up starting the infusion until about 4. A one hour infusion, plus two hours of observation after meant we didn’t leave the hospital until 7. Clinic usually closes at 4:30/5, though the nurses and doctors never actually get to leave that early because they have so much work to do. Even so, I think my nurse was the last of the nurses to leave and I was certainly the last patient. We are hoping all of the infusions later this week will start earlier. Even though I didn’t have any problems, they need to report my blood pressure for every 30 minutes after the infusion. Last week one of my doctors thought maybe by the end of the week when they knew I was tolerating it I’d be able to leave early but now I kinda doubt that. At one point, my blood pressure cuff was measuring constantly – as soon as it would deflate, it would start to measure again and my nurse wasn’t sure how to stop the machine. She called one of the younger, more tech-savvy nurses to help and said she was “in the trauma room.” My mom and I simultaneously said “WHAT?!” I’m not entirely sure why I needed to be in the trauma room (it’s right across from the nurses’ station) but I guess it had something to do with the experimental medicine that they’ve never given at in Hopkins Pediatric Oncology before. I think I’ll be in there all week unless a true trauma patient is there. It was sunnier than most rooms and it was nice to be right near everyone because it was easy for people to stop in. A bunch of my doctors/nurses/child life specialists came by to visit while we were sitting around today which was really nice and made the day go by a little faster. During the infusion, my stomach felt a little uneasy even though they gave me Zofran beforehand but I still managed to eat two packs of oreos and two tacos so I can’t complain. The doctors aren’t expecting any crazy side effects from the drug (but I guess the two hour observation period is to be safe) because it is an immuno-modulator. The bag still had a chemotherapy label, which we all thought was odd, but it doesn’t act like chemotherapy. If I remember correctly, it can affect the toll-like receptors and the natural killer cells and hopefully rev them up and make them attack my leukemia.When I googled “How GNKG168 immuno-modulator works” to see if I could find a better explanation, my blog was on the first page of results! Cool, but not very helpful for finding more answers. Next time I talk to the doctors, I’ll ask more about the process, but even when they first talked about it, it sounded like they’ve seen it work but nobody really knows exactly how it works. I guess that’s to be expected for a phase one trial. Since my last post I’ve been pretty busy! I’ve spent a lot of time at Cool Kids getting ready for their upcoming Running Festival this Sunday. I have at least a dozen friends and family coming and I’m really excited! I was worried that the insurance issues might cause my medicine to interfere with my availability after I’d convinced so many people to sign up. I get the drug for 5 days in a row which currently takes me to Saturday. I’ll either be admitted Friday night so they can give it Saturday morning or I will go to the inpatient side for a few hours on Saturday (since clinic is closed on the weekends). Luckily, Sunday is still free. If you’d like to walk or run a 5k or a 1 mile course, let me know by tomorrow (6/25) at noon! Some of you may also have seen on Facebook that they purchased a condo in Myrtle Beach to send families to. Shoutout to Becca for donating some games to send to the condo for rainy days! On Saturday, we went to a cookout at our neighbor’s house. I ate a lot of food, got a ride in a ’67 Firebird and overall had a great normal summer afternoon. I was still full when I woke up the next morning. My family also went for a hike at Sugarloaf Mountain. We are hoping to travel to Maine this summer so we wanted to do a test hike to see what I can handle so nobody has to carry me out of Acadia. It went better than I expected. My mouth gets dry really easily from the radiation and my muscles were tired because they haven’t climbed anything too steep for a while but I made it! That’s about it from me. I’ll try to post another update later this week but I hopefully won’t have many medical changes! Please continue to send thoughts and prayers, not just to me but also to my friend/fellow transplant patient Dale! Thanks, as always, for all your support!
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AuthorI’m Karen. I was originally diagnosed with Acute Lymphoblastic Leukemia (ALL) in August 2004 when I was 10 years old. When I was working on my college and scholarship application essays two years ago, I wrote about my journey. Although it was a rough few years, it became such an influential part of my life that I can’t, and wouldn’t want to, imagine my life without having had cancer. I called it the worst best thing that ever happened to me. Archives
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