Hey everyone! I think my last post got a record number of views - I wish I had been sharing better news! I didn’t learn much of anything new until today which is why I haven’t posted anything. I was also temporarily without a computer and the idea of typing an entire update on my iPad was not particularly appealing. Before I get started on my own updates, I’d like to ask for lots and lots of prayers and positive thoughts for my friend Dale, who’s having some post transplant complications. I really appreciate it and I know his family would too. Thank you to everyone who sent positive thoughts my way last week. Or funny texts. I learned my friend’s karaoke jam, the hours of the nearest chipotle, and lots more. Also, my friend’s timehop last Tuesday (from a year ago) said "in the words of my best friend Karen: plot twist." Weird coincidence, except this year instead of her life, it's my life. I really enjoyed all the humorous texts and messages that helped me laugh instead of cry! I guess I wasn't particularly clear in my last update but I am home! They didn't hospitalize me since they didn't have a plan yet. There wasn’t much the hospital could do for me until all of the tests were done and I was approved for the studies. While I waited for news, I stayed really busy. I constantly needed something to do so that I wasn’t alone with my thoughts – the first time a slow song came on during my drive to work I started crying. From then on, I started only listening to upbeat songs I love to sing along to. That has reduced my crying considerably. I posted my most recent update last Monday. On Tuesday morning, I went strawberry picking with my best friend/neighbor who had never been to Larriland! For everyone reading this from another county/state, Larriland is a pick-your-own farm near my house that has anything you might want and it’s all DELICIOUS. Jenn and I picked almost 20 pounds of strawberries. After I got home, I went to Hopkins for my ECHO (a heart test) and to sign the papers for the first study (the CNKG168 one). My doctor said we’d start Monday (as in this past Monday, which obviously didn’t happen). More on that later. I went to Cool Kids the other three days last week, where they kept me very busy which was great. Thanks to my new medical schedule, I’ll be able to attend their running festival on June 29th which I'm excited about. If you’re interested in a 5k or a 1 mile, sign up by tomorrow (6/20) to be guaranteed a shirt! You could win a medal! In addition to fun things like strawberry picking, I went whitewater rafting for father’s day! It was a pretty calm stretch of river but we had a lot of fun and it was Susie’s first trip so even the smallest rapids put a huge smile on her face! I stopped by the local Relay for Life, I’ve been reading more, and I am slowly reinstalling things on my computer since I got a new hard drive. It’s crazy how much I had been taking for granted on my computer – all my bookmarks and programs like Adobe Reader that I forgot I needed until I tried to open a PDF. Part of staying busy has involved eating lots of good food! I had my first frozen yogurt in over a year last Friday with my best friends, followed by breakfast at Double T the next morning. I went to my neighbor’s birthday party/crab feast and lost track of how many crabs I ate. There were cookies and cake at Cool Kids last week, plus a fancy cake at a Cool Kids/Cabot happy hour (where there was also lots of Cabot cheese, YUM!). I had Wawa one day and I finally had my first Chipotle burrito! I ate the entire thing and it was delicious - I’m trying to figure out why it took me so many years to go. I wasn’t surprised at all when I gained a few pounds since last week. I guess it’s about time for the medical stuff since that’s why most of you are reading this. We’ve spent the last week and a half asking lots of questions and getting answers. The insurance also had to approve the studies, and since I’m over 18 dealing with the insurance is ridiculously complicated. I have to give them permission to talk to my parents about anything – they didn’t even want to give my dad my case manager’s name! Today I had to sign some papers in the presence of a notary public. Yesterday evening, we got an email from my fellow with some updates. First of all, my bone marrow from last Tuesday had the same 1.8% MRD (minimal residual disease) as the week before that. The doctors didn’t have much to say about that other than “interesting.” It’s good that it isn’t growing quickly and it’s good that both labs have accurate MRD tests (the first test was at Hopkins; the second in Seattle). That 1.8% is not visible under a microscope, only through a flow cytometry test that looks at the molecular level. Last week, I got all the tests that are required to begin the GNKG168 study this week, but between the insurance issues and all of our questions, we didn’t begin this week. We wanted to make sure that the GNK study would not affect my ability to participate in the CHOP or NIH CAR T-cell studies. CHOP confirmed that the GNK will not interfere, and they think it is a good option in the meantime while I wait. Studies only take a certain number of people, and I am the last person accepted into the GNK study. Just to refresh, the doctors want to do the GNK study to keep my leukemia level stable because the CAR T-cell treatment takes time to genetically modify the cells. There are two CAR studies nearby – NIH and CHOP. The CHOP study requires 5% blasts, which I think means 5% of the white blood cells visible under a microscope must be leukemia cells. Right now, it isn’t visible under a microscope at all so I don’t currently qualify but they would harvest the cells anyway. The NIH study is currently closed but they are planning to re-open it so I’m already on the list. That one does not have a minimum disease level so that is obviously preferable. I’d rather treat what I’ve got instead of letting it grow in order to treat it at CHOP. However, I will be put on both waiting lists just in case. Clinical trials require a month between them, so I can’t get the modified T-cells for a month after my last GNK infusion. The month allows for better control with the medications, since they want to know which therapy is really helping. At this point, none of my T-cells have been harvested at either NIH or CHOP, though hopefully that will happen soon. This morning, I got another ECHO and a lot of labs because they need to be done within a week of starting the GNK study. I also needed a spinal tap, which I didn’t know until I got there. I hate when they spring those on me! Oh well, it went fine and I didn’t sleep all afternoon. I am all ready to get my first dose of GNK on Monday afternoon. Each dose is a one hour infusion followed by two hours of observation, and I’ll be getting a dose Monday through Friday next week. After that, I have a week off, though they’ll check my bone marrow once. The next week, I’ll get more GNK and the cycle repeats for up to 12 weeks (6 cycles). I don’t think I’ll need it that long, but that’s what is available. At some point, my t-cells will be harvested so they can be modified, and the schedule for the t-cell therapy will help determine how many cycles of GNK I need. That is all TBD right now. A family friend sent us an article about the CAR T-cell treatment that helps explain things a little more. If you want to know a little more about the science, check it out! I’m probably forgetting some things but it’s late and I want to sleep. Basically, I’m still feeling great, my leukemia didn’t grow, I start the first trial next week and I’ll hopefully be getting my t-cells harvested in the upcoming weeks. The first trial is outpatient so I’ll be continuing tostay busy and enjoy summer! I hope you all are doing the same! Also, in case anyone was wondering about the title of this post, it’s lyrics from a country song (again), called Sounds Like Life to Me…”the only thing for certain is uncertainty, you gotta hold on tight, just enjoy the ride, get used to all this unpredictability...” Sounds pretty accurate to me right now!
3 Comments
Marilyn
6/19/2014 05:58:09 pm
Yay! Excited to see you at the run on the 29th!! You will prob crush me :)
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Karen Shollenberger
6/20/2014 03:40:18 pm
I'll probably be volunteering rather than running but even if I was we would be in different age groups so no competition! :) See you there!!
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Savannah
6/21/2014 02:04:03 pm
Karen I love the quotes at the end! Looks like a future of hope! I'm happy there seems to be a few options. And chop is so close to Drexel, we can go together ! I'm glad you can still enjoy your summer. This is just another small hill you have to climb, a bump in the road! We got this. Everyone is rooting for you. Love ya.
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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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