As most of you probably guessed from my facebook status yesterday, I have some bad news (though I stuck some happy stuff in here too because I refuse to post an entirely negative update). Usually when I sit down to write these posts, a good title comes to mind. Today I’ve considered everything from “goodbye poster child status” to “bad news during finals week is extra bad news” to “life throws curves.” This is Drexel’s finals week because we have quarters. Luckily I’m only taking one class right now because of my internship so I only have one hour-long exam. I don’t think I could handle studying for more than that right now. Anyway, the title for this post actually came from one of my best friends, Morgan. When I texted her the news, her first response was “If leukemia was a guy, that Dixie Chicks song ‘Goodbye Earl’ is what I would play the next time I see you.” That was just the motivation I needed to remind myself that this is a rough patch on the road but I can get through it. Laughter is great medicine. Last week’s post mentioned my 6 month bone marrow aspiration that needed to be clear to take my port out. On Friday, while I was at work, my mom got a call that said the results were not as everyone expected: they showed 1.8% leukemia. The leukemia has not yet made it into my blood, it is just in my marrow, so we caught it early. My last bone marrow aspirate was three months ago and that one was clear. What does this mean? I wish I knew. I haven’t even known for 24 hours. I had bus tickets to head to Drexel for the weekend to visit some friends and help my boyfriend move into his new apartment. I know my parents were shocked, devastated, heartbroken, and every other sad adjective out there on Friday but they made a very thoughtful decision to let me enjoy the weekend worry-free and I’m incredibly thankful for that. Sure, I might have tried harder to see even more people if I’d known (because now I’m not sure when I’ll be back next), but I don’t want my friendships to revolve around my illness anyway. I saw a bunch of people, even if it was for a brief hug, and I had a nice weekend of normal, riding the bus without a mask and eating at restaurants. My bus ride up was wonderful – I had a front seat on the upper level of the bus, it was on time, the outlet worked, and I didn’t hear a single cough or sneeze the entire ride! Some of you may know or remember from previous posts that I used to drink a ton of milk but it started tasting like chemicals from the chemo in the fall. My family and friends have been bothering me since I got home from Baltimore in February to try milk again. I refused because it was just so gross in the fall. Over the weekend, Phillip made me breakfast and got milk to go with it so I gave in and tried it. It doesn’t taste like chemicals anymore, but it didn’t taste good either. I’m hoping it’ll taste better eventually! Another story from the weekend to keep this update not as depressing: Now that I can eat out without worrying as much about germs, Phillip decided to take me out to dinner for a belated 1-year celebration. (He also made me brownies with a 1 candle in them because he’s awesome). Anyway, because now I’m allowed to eat wherever, I decided we were going to Chipotle. I’ve never been, but he loves it and every time he went over the past few months he told me he couldn’t wait to take me there when I can eat food that’s been sitting out in containers like that. I decided Saturday was a perfect time since I could finally eat there again and I didn’t want anything that required getting dressed up or would take too long because did I mention we still had furniture to put together? Thank goodness for a little caffeine because it was not a quick process. Anyway, we headed to Chipotle and it was almost empty which was weird for dinner time on a Saturday. Then we noticed the sign that said they were out of chicken and steak. That didn’t leave many options so we went to a Qdoba down the street. This probably doesn’t seem like a very funny story, but you probably don’t know that the first time the two of us hung out, we went to Ben & Jerry’s for free ice cream day. I had work to do for The Triangle so by the time we got there an employee was standing at the end of the line turning people away because they already had enough people in line to last until closing. Chipotle and B&J are within two blocks of each other. We just have really bad luck with food over near 40th street; apparently we need to start eating in center city more often. After dinner, it was back to the furniture. A few weeks ago I saw a meme that said “You cannot be ready for marriage until you BOTH survived putting an Ikea furniture kit together” and I laughed and liked it on Instagram and didn’t think anything of it until we were sitting in his room laying out all the pieces for an Ikea bed. We couldn’t find the instructions and it easily could’ve been a disaster. We eventually got a new copy and worked out a system where I read the directions and found the pieces and he did all the lifting and tightening. We survived, and there wasn’t even a single breakup threat (though there were some tense moments). Don’t worry, marriage is the last thing on my mind, I’m just quoting the meme. However, Ikea furniture certainly is a good test of a relationship. So far, so good, I’ve chosen well :) I spent the bus ride home making plans for this week with some friends I haven’t seen yet since they got home from school. Little did I know I’d be cancelling them an hour later. Before I even walked in the door to my house last night, my dad told me that my bone marrow results weren’t good. I misunderstood and thought he meant the results showed it was 2% me and only 98% Susie. I was upset but I’ve heard of that happening before and usually the donor’s immune system takes back over. 2% leukemia? That’s another story. I thought a transplant was a cure. I thought I’d never be dealing with this again. I thought getting my port out was the next step, and I was upset last week when they were scheduling my next appointments on days that were going to interfere with my normal life schedule. Turns out that was a silly thing to worry about because I have another new normal on its way. What does all this mean? How did this happen? Remember how I said the doctors wanted a little graft vs host disease but not too much? Well I didn’t really have any and nobody seemed too worried. I did wonder at the time if that was a bad thing but I was thankful to not be on extra pills or anything and I stopped worrying eventually. Anyway, they like that little bit of GvH because it’s a sign that the donor’s immune system is also attacking residual leukemia cells that made it through all the chemo and radiation. As the doctor said, leukemia cells are tricky. It’s possible that Susie was such a good match that the residual cells tricked her immune system into thinking they were normal, just like they tricked mine. It’s also possible that she’s been fighting them for me for the last 6 months, but the cancer finally tricked her too. Either way, it’s obviously a problem. Does this mean the transplant failed? No. I’m still all her. She took over and I know her immune system can help me through what’s next with a little help from the doctors. I hope she never thinks that she did anything wrong, that this is her fault, or that she’s anything less than my hero. I don’t think she knows much yet since we don’t know much either but obviously she will once I’m back at Hopkins a lot. Today we went to meet with the doctors to discuss what’s next, plus they did another bone marrow aspiration, this one to send to Seattle for some other tests. I had them use the other hip, so maybe that will help. Even though I only found out last night, the doctors have been working on this all weekend, making phone calls and sending emails, warning my nurses so they weren’t terribly shocked when they arrived this morning. Anyway, there are quite a few options but a lot of them are clinical studies which have a lot of controls that must be met. There are the obvious criteria, like you can’t be going through any other trials at the same time and you can’t be pregnant and other things that could really affect the results. They also have levels of leukemia that qualify you to participate. More on that later. A few years ago, I would have gotten some white blood cells from Susie in an attempt to give me GvH and also have the graft-vs-leukemia effect. GvH does not sound like a fun time, and it has some long-term effects. Not major, but irritating, like dry eyes and dry mouth. Apparently this method either works really well or doesn’t work, and its efficacy for ALL (my type of leukemia) is lower than for other types of leukemia. So what are the other options? There’s a trial of a therapy called GNKG168. It’s still in phase 1 trials which is early in the medicine testing process (obviously, since it hasn’t gotten a name yet). It is an immune-modulator and it’s unclear to me how it works but the expectation is that it would help keep my level at or below the current 1.8%. The GNK gets infused 5 days in a row for an hour each day and can be repeated every two weeks if necessary, up to (I think) six times. Since it’s such a new drug it’s tough to know what the long-term effects would be. As with many medicines, this one lists secondary cancers as a side effect. Isn’t this fun? They don’t expect this to be a cure, but they hope it will buy us some time. Why do we need time? It seems ridiculous to walk around knowing I have leukemia in my bones and just trying to keep it from growing. However, there’s a more promising treatment (also new, and apparently in the news recently so you might have actually heard about it) called CAR T-cell, which attacks a specific protein on leukemia cells. They would take some T-cells from me (they’re a type of white blood cell) and genetically modify them to attack that specific protein. This is a targeted therapy that doesn’t have as many nasty effects as chemo, though it is still in trial as well. Hopkins doesn’t do this therapy – I would have to go to CHOP (Children’s Hospital of Philadelphia) or NIH. The NIH study is currently closed, but my fellow is working there right now and is trying to find out if it will open back up soon. The CHOP study requires 5% leukemia, so as my mom put it, I’m not sick enough for that one. If the NIH study does not open back up, the doctors would let my number get that high so I could be part of the CHOP study. NIH doesn’t have a level limit. We also need to find out how taxing this treatment is. If I can attend school while doing it, CHOP makes a lot of sense. We will need to make this decision soon so they can collect the cells and begin modifying them. They can start modifying even if my level isn’t at 5% yet. There’s a wait list for this therapy though, so the sooner we start things the better. Meanwhile, I’ll probably be getting the GNK to keep my numbers in check. As it turns out, most people who have post-transplant relapses have much higher percentages (like in the 30s and above). If my level ever gets that high, which I hope it doesn’t, there are a lot more studies and options available because that’s more common so there’s more research about it. A lot of those treatments involve more intense chemo, while the targeted options in the current plan do not. Right now, my level is low, but my doctor said that’s like being “a little bit pregnant.” If left alone, it’ll continue to grow, which is why they need to start the GNK to keep it low. After all that, if there is still residual leukemia, there’s a possibility of another transplant. Remember in the fall when I thought getting a transplant was the scariest thing ever? Now getting another one is even scarier. So is signing off on all these experimental therapies, but that’s a different issue. A second transplant might be necessary to get yet another immune system to try to attack any residual leukemia. Certainly we are all hoping the T cell therapy will cure me and another transplant isn’t necessary. Even if it is, they wait at least a year (so until December) because transplants are tough on the organs. They can do reduced-intensity transplants, but those aren’t nearly as effective (if I got one next week – so without any of these trials and without getting me into remission first - the doctor estimated a 20% chance of it working). Luckily, there are all those other options because I don’t like those odds. The good news is I’m still feeling great and generally have a lot of energy so I hope that means good things for my organs. This update has is longer than my final paper for the class I took this quarter and it got me all the way to page 73 of my blog document. Thanks for all of the love and prayers these past 24 hours! If you have any questions, let me know but I may take a bit to reply – I do have a final to take and another appointment at Hopkins tomorrow. If you want to read more about the clinical trials, check out www.clinicaltrials.gov and let us know if you think of any questions we should ask in our next meeting with the doctors. I’m sure you have better things to do, but my mom put the info in her email update so why not include it here too? My bone marrow doctor had to leave the state unexpectedly so we don’t know when he will be back for us to talk to him, plus we have to wait for the results from Seattle to move forward. We really don’t know when anything is going to start; it’s a waiting game right now. That’s all I’ve got for the moment. If you’ve stuck with me to the end of this update, I’m impressed and I love you! If you’re angry or frustrated, I completely understand. I suggest getting a Dammit Doll.
8 Comments
Shawn KElley
6/10/2014 02:47:03 am
Hey little warrior! Im thinking of you and routing for you and praying for you! You are amazing!
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Karen Shollenberger
6/10/2014 04:05:01 am
Thank you so much Shawn! It's always nice to know my camp family is on my side<3
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Natalie
6/10/2014 01:43:31 pm
I was surprised and angry to hear of this (not at you, just at those damn cells). Thinking of you and your whole family and sending love and prayers from PA. Hugs, too.
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Karen Shollenberger
6/10/2014 04:48:41 pm
Thank you! Yeah I'm shocked and angry too, I completely didn't see this coming.
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Savannah
6/13/2014 04:53:03 pm
Hang in there Karen!! Love you so much!
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Karen Shollenberger
6/14/2014 02:32:06 pm
Love you too!
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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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