I know it’s been a while since I posted an update so I have a lot to say. Since my last post, I’ve been to Maine, turned 20, and apparently provided plenty of fuel for those 1.8% of my cells that were leukemia. There has been a lot of fun in the past few weeks which I will write a separate post about another day. I have lots of gorgeous pictures to share but this update is going to be almost entirely medical because the plan has changed a bit over the last few days. I know it’s going to be way too long already, even without the fun stuff. Last week was my second week getting GNKG168, after the off week the previous week during which we went to Maine for the 4th of July and ate lobster and went hiking. It was amazing as always. Anyway, we got home at 4:30am and I had a bone marrow aspirate later that morning, 11 I think? My doctor thanked me afterward for staying perfectly still – I was so sound asleep the whole time. After the bone marrow, they did the 1 hour GNKG infusion and I didn’t wake up until I had less than an hour left of my two hour observation period, which was great. The week continued much like the first week of that trial, 4-5 hours in clinic every day and going to Cool Kids in the morning when I had afternoon appointments. Susie came with me one day and learned how to make a care package! On Wednesday, I had a cardiology appointment to follow up on my ECHO results. When we got there, the cardiologist looked at the test summary and asked us “why are you here?” He saw a few little things that I’ve had my whole life that aren’t really problems. He also said both my 3-month and 6-month post transplant ECHOs showed that one part of my heart is slightly enlarged, but it is measured in relation to my height so that was probably because of my low weight at the time. Even though the 6 month test still showed it was enlarged, it wasn’t listed as concerning in that one which makes sense because I had gained a lot more weight by then. It’s always nice to have the doctor say “why are you here?” instead of “why didn’t you come sooner?” so that was good news. Friday was my last day of GNKG168. It was also my birthday. Clinic that day was pretty good – it was pet therapy day and the clowns came around, plus multiple people sang happy birthday. One of my clinic nurses even called me to tell me happy birthday on her day off! I had friends from near and far (even other countries!) wish me happy birthday, plus we had a taco night and castle cake (the explanation of that will come in the next post) and I went to a water park the next day. Huge thanks to everyone who was a part of my birthday weekend and made it a great weekend of normal before yesterday’s bad news! My bone marrow from last week was sent to Seattle for the study and as of yesterday the results weren’t back yet. However, Hopkins ran the same test…which showed that my 1.8% jumped way up to 24%. Normally I’m happy to see the number 24 but this time it was a bit of a shock. I knew the GNKG168 was a new therapy and nobody had super high hopes for it but I thought it would help control it more than it did. Who knows, it might have helped some and I could be over 30% without it but obviously it’s not working as well as we all hoped it would. Unfortunately, that means more chemo. The original plan was to continue the GNKG stuff until I could get the CAR T-cells and I wouldn’t need more chemo. I really liked that plan because of the limited side effects. I still feel great. I have no symptoms of leukemia. It’s frustrating to feel completely fine and have the numbers say the opposite – though technically I need 25% to be considered a relapse. I’ve probably gotten there since Monday though since leukemia doubles pretty quickly (which explains the jump from 1.8 to 24). If only love could fight cancer, because then I’d be cured since I know my doctors and nurses (and all of you reading this) love me. They knew about the 24% on Friday, but waited until Monday to tell me so that I could enjoy my birthday and my weekend. This was a collective decision that involved lots of emails with everyone who was going to be talking to me on Friday and I know some of them were really unsure about sort of hiding it from me but I could not be more grateful. I knew that potentially bad news was coming because a preliminary test showed around 10% earlier last week but the 24% would have been a little too much to handle on my birthday. Chemo. Steroids. Feeling sick again, spending time inpatient, being moody and hungry, potentially losing my awesome frosted hair again, no more freedom to eat/do whatever I want. I’m really not looking forward to any of it. I have the plan, which outlines 28 days, and where we go from there depends on how effective that first month is. The good news about the 24% is that I qualify for the CHOP study now. 6% would have done that or even 5.1% but I guess my body likes to aim high. There’s an increased sense of urgency now, so my dad and my doctors are trying to get the insurance to approve it ASAP. As you may recall, once my t-cells are harvested, it still takes a few months for them to be modified. Once I start chemo, I’ll have a lot fewer t-cells which would make it tough to harvest enough so I’m really hoping I can get them harvested this week or next. That’s all dependent on insurance, which doesn’t cover phase 1 or 2 trials unless there is significant evidence that they are better than the other existing therapies available. There is a lot of evidence about the t-cell therapies (and apparently it worked great in rats!) and it was recently designated as an FDA “breakthrough therapy” which speeds up the development and review of new medications for critical illnesses. If that isn’t enough proof for the insurance I’m not sure what is. Once the cells are harvested, it sounds like I’ll be getting chemo until the cells are ready for me. When do I start? That’s a great question. Since I still have no symptoms, they didn’t make me start last night or anything but if I start having some that will change. The current plan is to have our big thanks for being awesome and supportive party on the 26th and then start chemo, which will give me just enough time for the inpatient chemo between the party and the start of Camp Sunrise. Since I still feel great and probably won’t be feeling great again for a few months, the doctors are trying to work around the things I really want to do. Sure, we could cancel the party but I really want to see everyone and have a very fun happy day before I’m admitted to Hopkins and don’t have as much energy for fun things. Plus, everyone has been so supportive and I want to say thank you! The other good news from yesterday’s meeting is that the doctor I talked to yesterday (who is the head bone marrow doctor) is hoping not to do another transplant. Previously, my fellow said the the t-cell therapy would get me into remission so that I could get another transplant. That sounds pretty terrible but of course I’d do it if I had to. In the meeting yesterday, it sounded like the t-cells from CHOP are strong enough to reproduce for the rest of my life. That would mean I won’t have B-cells ever, which means I’ll need antibody infusions (since B cells make antibodies) but that’s certainly preferable to another transplant and all the potential side effects and organ toxicities from that. If I was 8 years old and my organs were still maturing, they’d recover a lot better from the massive blow from the chemo and radiation of transplant #1 but I’m 20 now. My organs are still pretty healthy considering all I’ve been through but I don’t want to test them too much! Good news: I qualify for the CHOP study. Bad news: I aimed too high. Uncertainty: when I will get my cells harvested. Good news: I have a treatment plan. Bad news: It involves chemo. Uncertainty: When will I start/how will I feel? The list could go on and on but I like to end with good news: the currently plan doesn’t involve another transplant and I’m still feeling great so I plan to enjoy the next week and a half to the best of my ability. My best friends planned an impromptu ice cream/snowcone night last night which was great (even if it meant this update had to wait for tonight) and my family got Chinese takeout for dinner while I’m still allowed to eat it. I hope everyone is enjoying their summer! I’ll be enjoying my last bit of freedom for a while (but a post about all the fun stuff that’s been going on amidst all this medical stuff coming soon!)
1 Comment
irma
7/16/2014 05:05:11 pm
Thinking of you as you undergo treatment, that love and medicine pack a powerful punch.
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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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