When it comes to my blog, usually no news is good news. In this case, no news meant I really didn’t know what the news was and then I had no time to share it. This is a long update – I hope you’re ready! My bone marrow last week went smoothly and after a long nap I even made a real dinner and a delicious apple cake (I figured I would either need a cake to celebrate or for comfort food). I got a call from Philadelphia that the preliminary results looked pretty good – they saw about 1% CD19- (hiding the antigen my t-cells look for) blasts under a microscope but it wasn’t really enough to make a decision so we had to wait until Friday. I was worried because at the last test, there were no blasts visible under a microscope so I figured this meant bad news. I had lunch with two of my friends on Friday which was a great distraction because focusing on homework was tough without knowing whether I’d even be finishing the term. On Friday afternoon, I got a call from CHOP. I was terrified to pick up the phone but I knew I had to. They looked under the microscope again, and decided they were wrong about the 1%. Those were baby cells, not leukemia, which I found encouraging. He said my MRD was up to 5%, which was definitely some growth but I had previously decided I’d finish the term if there was less than 5%, and even 5-10% I’d consider it. He was going to find out when CHOP’s CD22 study was opening and get me some more information about a few other things and call back on Wednesday. I talked to my parents and texted a bunch of my friends with relief. Even though it wasn’t gone, I at least had a little more time at Drexel. I never thought I’d be excited to hear 5% MRD but that excitement was short-lived anyway. That night, I got an email from the doctor at NIH mentioning “some discrepancy in the results” without any explanation. Needless to say, my ability to do anything productive completely disappeared. My dad was going to talk to her on Saturday morning to find out what was going on. Before the call, I got an email from my doctor at Hopkins, again mentioning the “variability in the results.” Maybe it’s against the rules to put numbers in emails, but it should be against the rules to leave me hanging like that. My dad finally called me– Seattle had seen 9-11% and NIH saw 15%. While these numbers are low in terms of overall disease level, since it’s not even visible under a microscope or in my blood yet, they’re a huge jump from 1% and my high hopes for the rest of the term were crushed. I had less than two hours between my phone call with my dad and my bus home. I packed a few things and left, with no idea when I’d be back at Drexel. I hadn’t gotten a schedule from NIH beyond the fact that if I wanted to enroll in the next slot in the study, they NEEDED to see me by Sunday (the next day) and wanted to harvest cells for modification on Thursday. I didn’t understand how the results could be so different, but the doctors later explained a little bit. MRD isn’t visible under a microscope, so that makes it harder to test to begin with. When they originally developed the test, it used CD19 markers to get the results, but my leukemia is CD19- and that’s much harder to detect and count. It’s still a bit surprising that they’re so different, but I know it’s better to be cautious and trust the higher numbers. My first impressions of NIH were not particularly great, though they definitely improved throughout the week. First of all, it’s a pain to even get in because the security there is crazy since it’s a government property. It’s almost worse than the airport, except you can leave your shoes on. Turn off the car, open all the doors including the trunk, and take all electronics and bags through the metal detector and scanner while they search the car. Then they make each person a temporary badge. Since I’m a patient, I went a few days later to the badging office and got a more permanent badge, and both of my parents have gotten them now too. Those allow us to skip the search which saves a lot of time, though getting the badges wasn’t a quick process either since they had to run background checks on all of us. I can’t imagine what the process is like for all the foreign patients. Sunday I was just there for labs but it still took forever because nobody really knew what was going on. All I could think was “I hope they’re better at treatment than communicating!” That’s a little bit unfair, because my doctor worked really hard on Saturday to set up all these appointments after her conversation with my dad, but we were under the impression that all the appointments had previously been set up and they’d just cancel them if I wasn’t interested anymore, so it was a little frustrating. Everyone in the pediatric clinic was very nice, including the doctor leading the CD22 study, but Monday was still a long, painful day. The worst part was that I had an abscess which needed to be drained. They could only numb the surface so once the doctor started digging around inside it I was crying and screaming more than I ever have during a procedure. It was an incredibly painful process, but it’s clearing up nicely now even though the bacteria in it turned out to be resistant to the first antibiotics they gave me. After all that, I was just plain tired and feeling completely defeated. While a lot of people (relative speaking…) have received the CD-19 CAR cells, I’ll be patient number 9 in the world for CD22, and only patient 3 at this dose level. For reference, I was around 30 at CHOP for CD19, probably around 50 considering how many other hospitals were doing similar studies. I’m making history, but it basically means they don’t have enough data to tell us much at all about efficacy. It’s a phase one trial, which means they hope it works but it’s more about testing for safety right now. I completely lost it while we were sitting around waiting for our background checks to go through for our badges. I keep fighting so hard and no matter what I do, it keeps knocking me down when I least expect it. All of the doctors have slightly different ideas about how to proceed, I had appointments every day during midterms week, and I just felt like there was no way to win. That night, I saw a quote from a tv special on Make-A-Wish from a child deciding whether or not to do a third bone marrow transplant. Third, and here I am terrified about the possibility of a second: “Would I rather die or have the chance of living?” This, in combination with some sleep and time for my abscess to heal made me feel significantly better about the situation. Tuesday and Wednesday were more tests: an eye exam, CT scan (the liquid they made me drink was so disgusting I almost puked), echocardiogram, EKG, etc. Everything came back great – the doctors even said I’m very healthy…except my bone marrow. I’ll take what I can get. Thursday was another extremely long day. I had to be at NIH at 7:30am (which meant leaving my house crazy early) but it was more than two hours before they took me back and I was getting so hungry I couldn’t focus enough to read my book. It turns out, interventional radiology doesn’t even start seeing patients until at least 8:15, so we aren’t entirely sure where 7:30 came from. The line placement didn’t take long, and since I only had Versed and Fentanyl, I went right to apheresis when they finished. The cell harvesting went much faster than the one at CHOP because the machine and my line cooperated unless I turned my head to much to the side. The line was in my neck and it was pretty stiff. For some reason, this made it painful to swallow, so I didn’t eat anything but pretzels and a muffin for lunch either. They made sure they had enough cells and then I went to the day hospital so the doctor could take my line out. That part was easy – cut the sutures and pull it out, then apply lots of pressure for 15 minutes and stay flat for another half hour to make sure it healed since the line had been in such a major vein. I went home with a pressure dressing on my neck, and by the time I went back Friday morning for them to take a look at it, I was ready to claw my skin off. I’m very sensitive to adhesives, and I know they didn’t have much choice about that one but my skin wasn’t very happy! Even as they were ripping it off, I felt better. Once the dressing was off, my skin was still stickier than a fly trap but it turns out baby oil is a great adhesive remover! Thanks Google! That was my last appointment for this week which was a relief. One of my friends came over and we went for a long walk and enjoyed the beautiful fall day before I came back to Drexel this afternoon. I went to my sister’s soccer game this morning and we didn’t think the bus times through very carefully so I ended up missing my original bus but I got back eventually! It’s nice to be back after a week away, but I have a lot of catching up to do! Two of my classes were already online this term, so those are easy to continue. My other professors have been very accommodating and all offered me the option to continue my work online. I would’ve hated to throw away all the work I’ve done in the first half the term. Keeping up 18 credits will be a challenge and I may end up withdrawing from one of two later if I can’t handle it but at this point I’m too invested to give up. This week was midterm week and I was so busy with appointments for the entire thing so it’s a little difficult to gauge whether I’ll have time for the rest of the term. Hopefully the next week will give me a better idea. I have another bone marrow aspiration on November 6th, but I’m free until then. I don’t think I’ll stay at Drexel the whole time since I’m not tied down by my classes, and it’s already a bit depressing to be back so temporarily. I might leave earlier than I need to and go travel, because leaving by choice for something fun seems so much better than leaving November 5th because I have to. I have three days of low-dose chemo starting November 9th and my cell infusion will be the 13th. I’ll be inpatient from the 10th until the 29th, which is Black Friday. I’m hoping to get out a few days early for Thanksgiving but I know I can’t count on it. It seems like there are a lot of activities for patients there and they even have outings some days which surprised me. Plus I’ll have homework to do and I have a bunch of friends nearby or coming home for Thanksgiving. The plan after we get the results from this trial is still up in the air. Shoutout to everyone who has donated blood and joined the bone marrow registry – you guys are saving lives and I’m proud to have such great friends. Thank you all for the prayers and positive thoughts as always! You all keep me going on the really tough days and I always appreciate you all believing in me: You think I’m strong, you think I’m fearless Even when I’m at my weakest You always see the best in me when I can’t I wanna be the girl you think I am -Carrie Underwood, “The Girl You Think I Am”
10 Comments
It’s been just over a month since my last bone marrow aspiration at CHOP, and tomorrow I will have another one to determine whether or not those funny-looking cells were actually leukemia. I’m dreading it and looking forward to it at the same time. I hate not knowing, but I’m not sure I want the answer.
Last month, the doctors thought they saw 0.97% MRD, which is at the molecular level and can’t be seen under a microscope. Technically, this is still clinical remission since it’s less than 5% blasts. If the results from tomorrow’s test show I’m still in clinical remission (or very close), I will stay at Drexel for the rest of the term and reevaluate in December. If the leukemia is growing quickly, I will start the process for another CART treatment next week, this time at NIH since the CHOP study isn’t open yet. If by some miracle the tests show that the funny looking cells from last month were really just baby cells, apparently I’ll be doing cartwheels across campus (and yes, I’ll make sure someone takes a picture if this happens). I should have the results by early next week. Academically, I’ve been planning for the possibility of missing the end of the term. Socially, I’ve been ignoring it and getting involved as if I’m staying. I was going to drop a class because 18 credits is a lot of work, but the class I wanted to drop is online. I decided to keep it because it’s one I should be able to continue no matter what happens medically. I have two online classes that I’d definitely be able to keep, and I’d see what I can work out with the four that are on campus since I’m halfway through the term and I don’t want to throw that work away. I’m still feeling great and have no symptoms whatsoever so it’s a bit overwhelming to spend my free time filling out medical forms and talking to the doctors. I’m enjoying my classes though and my roommates and the few friends I still have here have been extremely supportive. Your positive thoughts and prayers for tomorrow’s test are more appreciated than ever. I’m doing one of my projects for class on the importance of social support for cancer patients. I read a journal article the other day about all the different types of social support that participants found important and I realized how lucky I am to have every spot filled by not just one but multiple people. As always, if you’re looking for a real way to help not just me but other patients, give life: donate blood or join the bone marrow registry. I love you all. |
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
April 2022
Categories |