Newsletter

Monday, February 12, 2024

Short & Sweet

I had a scan last Friday which showed that things are shrinking! Yay! I just hope that it continues!

I’m soooo excited to fly home Thursday, and I’ll continue doing the immunotherapy with my local oncologist. Thanks for all the well wishes, messages, gifts, prayers, love, and support. Now time for some pictures of my sweet caregivers because pics are more fun. 





We learned that Will can make chicken parmesan. Now life will never be the same. 

Bday gifts and hugs from my sweet Rell.

More bday gifts from the Moffitt nurses which of course made me cry. 


What fighting cancer actually looks like. (Not pictured: Bravo tv.)


Making friends as we do countless laps around the apartment complex’s pond in an attempt to improve my motor neuropathy.







Saturday, January 20, 2024

Wow. What a journey.

My brain is still foggy and tired from treatment but the people want an update and I want to give the people what they want!


I’ll start with the 5 days of high-dose lymphocyte-depleting chemo. Luckily, these were outpatient days but the first two were 12 hour days. I received cyclophosphamide and fludarabine. Cyclophosphamide made me feel nauseous and tired. Luckily, the last three days were just fludarabine, which I didn’t find to be too bad. 


TT took care of me during the beginning of the trip, and Will took over halfway through the chemo. Shortly after the chemo, I checked into inpatient for the big treatment. I was nervous but mostly felt prepared and excited, because I’ve been waiting so long for this. 


Geniuses at the lab were able to prepare three bags of my cells with roughly 14 billion cells in each bag. They even let me hold the cell bag, which was a weird milky color and which I was nervous to hold. A super sweet lady offered to bless the cells and I’m so glad we said yes. She wrote a personalized message that really resonated and even made Will cry, which makes me cry thinking about that. As you can imagine, there were a lot of protocols and a lot of people in the room. The moment felt so monumental probably because of the buildup to get to this moment, and what it could do for me. 


My first reaction was sneezing because of the preservative which I thought was pretty funny. My nurse practitioner told me my official side effects from the TILs started about 47 minutes after the infusion. Pretty quick. The worst side effects were the rigors and chills followed by the nausea and vomiting and an increased heart rate, making it hard to sleep. My nurses were great about giving me meds to counteract these side effects as best they could. 


A few hours after the TIL infusion, we began the IL-2 infusions. There were a total of 6, and good news, I managed to get through all 6 which everyone was happy about. The IL-2 is to help stimulate the lymphocytes and immune system. 


I was prepared for the worst when it came to side effects, but the staff kept reiterating that I was handling the treatment really well. The rigors, nausea, vomiting, elevated heart rate (my resting heart rate was about 120), feelings of sleeplessness and weakness were certainly hard but I'm grateful I didn't have anything more severe like fluid in the lungs. 


We were inpatient for 6 days but it felt like a lifetime. Will entertained me with drawings, dances, and sports betting. 


About halfway through the inpatient, my mom took over as the caregiver. 6 days probably sounds so short and the staff assured me things were going really well but I was going nuts. The small window didn’t open; I wasn’t allowed to leave the hallway, and I felt so restless probably because of my heart rate and not sleeping much. 


When I was discharged as soon as we left the inpatient hallway, I could feel a breeze and fresh air like I’ve never felt before. We had the windows down on the way home and when we got to the apartment, we just sat on a bench by a pond listening to the birds and the breeze. Needless to say, it felt so damn good to be outpatient. 


Although, I enjoyed that little bit of high of getting out of the hospital, I still go in everyday for labs and medications which is no problem. When you look at my blood work, it says “critical” for just about everything, which is to be expected. At the appointments, they’ll administer a WBC shot, platelet infusion, blood transfusion, magnesium, really whatever is needed for that day. My blood counts are so low that I can’t do anything that could possibly lead to an infection, like flossing and cutting my nails. As you can imagine, you feel like shit with such low counts. I feel very fatigued and tired and have a rash that luckily isn’t itchy.  My counts are slowly creeping up but it’s going to take some time. 


Further down the line I can expect research appointments, such as a needle biopsy and apheresis, my central line removal, as well as my first post-TIL nivolumab (immunotherapy) infusion. I’ll likely be here until the 3rd week of February and if things continue to go well, I can finish my year of nivolumab infusions in Denver. I don't think I'll know for a month or two whether the treatment is working, which is a little different from treatments I've had in the past. 


(Little side tangent for my oncogene NSCLC friends: I had scans right before my TIL treatment and was kind of surprised by the results. I believe the idea was to prove I don’t respond to nivolumab by itself but the scans showed some areas that decreased and some that increased. My overall tumor bulk was down a little which surprised me since I expected everything to grow. Also surprising was that pathology came back on my lymph node showing a TPS score of 90. Might be useful information for someone out there.)




Nervously holding my milky bag of cells. 

 










Will's drawing. He said you can either envision it as cancer cells leaving the body or as an exorcism. 
    



My hair started to fall out quickly two weeks after the chemo. This lovely pile was from after brushing it just one time. 




Hot GI Jane look. Having my hair shaved was not at all as emotional as I thought it would be. It was harder having the clumps come out every morning so this shave needed to happen. Will got a buzz cut in solidarity which made me smile. 











Hopefully my blood continues to improve and I continue to feel stronger and overall better. I still can't thank you all enough for the love, prayers, and support. From a practical standpoint, you have made the trial possible by helping me afford nearby lodging, airfare, and other expenses. I continue to feel such gratitude for you all. Thank you!


-Koko, Cor, CoreFore, Corey


Sunday, December 3, 2023

I’m speechless

I’m speechless. I set a monetary goal expecting to reach maybe half of it. It hasn’t even been a week since I posted the Go Fund Me and I’ve reached my goal. I spent half of Tuesday night in tears because I was so overwhelmed by the outpouring of love and support. Friends from childhood, high school, college, and adulthood. Friends of friends. Family members. Family friends. Friends of family members. The number of donations and messages I receive continues to bring tears to my eyes. I never thought in my wildest dreams that so many people would respond on the first night.

I have always been somewhat nervous about sharing my hardship for two reasons. First, I think because we live in a society where you’re expected to put your best face forward, especially with social media, we all seem hesitant to share our adversities. Fool the world that you’re doing wonderfully and that your life is practically a vacation. Sharing my struggles and health journey strips me of the facade that I’m completely “normal” and that everything is fine. It’s always felt like a risk. Second, the more people I have rooting for me, the more I desperately want things to go well. It’s an added pressure that I put on myself which I should probably work on. You forget that people truly want to help. That sharing the bad is what connects us and makes us stronger. The people you surround yourself with are everything. 


With so many problems going on in the world, I still can’t believe that so many of you took the time to read my story and donate so generously. It absolutely takes away the stress of questioning whether I can do this financially. And the messages of encouragement and support lift me up in an extraordinary way. Years ago a fellow lung cancer survivor said they typically only cried when overwhelmed by people’s support and generosity. (I think it was you, EmBen.) This week absolutely proved that to be true. 


Thank you for making such an impact on my journey. Cancer can be just a little stressful but because of all of you, I don’t feel financially stressed. It’s hard to express just how much that means to me. I couldn’t do this without your support. Love you all. 


I received confirmation that I’ll need to be in Tampa from January 1st until February 16th. You guys have truly made this trial possible. From the bottom of my heart, thank you.


Love,

Koko/ Cor/ Corndawg/ Corefore/ Corey 


https://www.gofundme.com/f/my-clinical-trial-at-moffitt














Thanks to Tim & Photoshop, I now know how to paint watercolor.

Tuesday, November 28, 2023

Moffitt TIL Clinical Trial: Screening Week

What’s it like to be screened for a clinical trial? Well, it’s a lot of tests: brain MRI, CT scan, pulmonary function test, blood work, EKG, examinations, signing consent forms, asking questions, and answering questions. I’ve been in clinical trials before but this is easily the most nervous I’ve been for a trial. It feels like getting into a beauty pageant where you’re trying your best to checkmark all the necessary eligibility rules. I was so in my head for this trial and overthinking everything, "what if they don't like x, y, or z?" "What if I have a bad brain MRI?" I received so many no's this past summer from various TIL trials (Iovance, Lyell, UPMC, Turnstone) that they began to eat away at my optimism. I even wore makeup my first day thinking that would somehow make a difference. It didn’t. Turns out I was overthinking for no reason. Dr. Creelan, the clinical trial coordinator Tanner, the surgeon, all the nurses, literally everyone at Moffitt have been amazing and it feels so damn good to finally get a yes.

So far, everything has gone smoothly. I was even told I got an A+ on my pulmonary test. My first A+ in cancer. I had surgery to remove a sample of my tumor from my lymph node which was sent to the lab at Moffitt where geniuses will work on extracting T-cells, augmenting them, and then replicating them so that there are billions.


A week after my surgery, I had my first infusion of nivolumab, an immunotherapy. I'm not expected to respond to nivolumab by itself but it will 1) prime my immune system for the TIL treatment and 2) prove that I don't respond to immunotherapy by itself. The only side effects I feel so far are some chills here and there, some muscle pain, and fatigue. I stopped taking my targeted therapies a few days before the nivolumab infusion and will not resume taking them. I've been on targeted therapy since 2014 so you can imagine how nerve-wracking this feels. But I trust in this trial and in science and am trying to focus on the fact that I'm finally here. 


After a two-week stay, Will picked TT and me up from the airport and surprised me with Elmo in the car. Yes, I’m overly obsessed with my dog. I was so elated to see Will and Momo that it almost felt like a weird dream state.


I literally could not have done this trip without TT. The emotional and physical support made it all possible. I can’t imagine doing any of this alone. 


I'll return for a very short visit in December for my second dose of nivolumab and then the month-long stay begins in January. Despite being told that the TIL infusion followed by IL-2 injections will feel like the worst flu I’ve ever had, I’m truly excited for it. 


Go Fund Me linkhttps://www.gofundme.com/f/my-clinical-trial-at-moffitt















Hobbling into surgery.


Post-surgery off-the-shoulder look.





                                Enjoying the sunshine before the hell that is Colorado snow.

















USF campus where Moffitt is located.





                                                                Reunited with our best friend.


Friday, March 15, 2019

New Pill, New Job, New Me (jk, same me)

How is it 2019!? And how am I still here? Science baby! Which reminds me, I need to raise more money for our ROS1 Research. Or if you're feeling frisky and want to donate, click herehttps://www.supportalcf.org/ros1/corey. It's good karma! And helps keep me alive :).

So it's been a while since we last talked and that's mostly because I unpublished my blog, lol? I was running into employment problems and couldn't risk the possibility of an employer googling and thinking, "hmm, do I really want to hire a cancer patient." Sad but true. Good news is I found a job! And they were already completely aware of my situation and they still wanted me! Go figure. And I am beyond excited to start it.

Alright, let's get to the juicy stuff aka what drugs am I on now (well, it depends on the night. jk jk). The answer brings another piece of good news! My tumors are shrinking & disappearing and it's oh so fun! After chilling with tumors for I think close to 3 years, they finally started to grow. It was awful. Probably my least favorite summer. To those that helped me through it, I love you more than you'll ever know.

Here are the dirty facts for my fellow cancer friends: I tried Brigatinib round April/ May '18 and it did not work. I should point out that I'm ROS1. Also, I did a Guardant test around April 2018 and it found I was ROS1 F2004V. Dr. Doebele had not heard of this variant yet but I think he wrote a paper on it. Trial and error is not that fun when it comes to testing cancer drugs but luckily the next one worked...

Lorlatinib! Or its new brand name is Lorbrena. Here she is.
It wasn't approved until recently, Dec. 2018 (or maybe November), so Dr. Ou was my saving grace (again) when he told me he had an opening in his clinical trial at UCI during the summer of '18. This meant flying to CA once a month ($ cha-ching!), getting the drug, and seeing the parentals, which was overall nice, especially once I found out it was working...which was right before the worst. scanxiety. ever.
Side effects are minimal compared to Entrectinib, at least for me. Everyone seems to be different. I have some fatigue and maybe a little cloudiness of the brain but I've still got it! I also quickly lost the weight I gained from Entrectinib which is nice. One side effect that almost everyone I know that's on the drug has is increased cholesterol. Dr. Ou said I could either go vegan or take Atorvastatin and he said this while laughing which I don't know why but I just love that. You may have guessed I went the Atorvastatin route.

This is the first time I've been on an FDA approved targetted therapy in years which naturally leads to..taking a trip to Europe! See ya later!

And before I go, here are pics of my friends who treated me in 2015 and 2019. <3 (still need to get a pic with my Colorado/ Anschutz squad)
Nurse Joni

Dr. Ou


Friday, December 29, 2017

I’m Still Hur!

I’m still around! And probably setting new records for the longest time lag between two blog posts. Lo siento.

I’ve been, (probably too), busy working in Boulder, CO as a photographer.

I’m still cruising on Entrectinib and the pill life aint too shabby.
I’ll give an update-blog post the time and energy it deserves but thought I should give a shout out that, ‘yep! I’m still around’. And breaking bones from too much dancing (literally, yikes). I’ll try my best to reach out to those who have been reaching out to me! <3

Wednesday, September 23, 2015

Hungry for Life

Many of you know that I recently went on my First Descents kayaking trip. Rather than describe the experience in words, I'm going to attempt via pics.
Just know that First Descents is an organization that brings together young adult cancer survivors (aka the most incredible people you will ever meet) for a week of white-water kayaking (or some other grand adventure).
And if you really can't stand a story without words, here are the words I wrote down on the plane home to capture the feelings (picked up this habit from Tanzania...when I was too lazy to write a journal entry (so everyday), I would write down a few words or bullets.)













































G-String, Snaps, Stoner, Creamed Corn, This Guy, Stitch, Smooth, Patch, Irish, Homewrecker, Mama Bean, Chef Vigetti, Chef Winks, Mayor, Rut-Roh, Bun Buns, Gnomeo, Squirt, Blunt, Omlette, T-Cell, I love you all. 
One of the worst side effects from cancer that no one warned me about is a sense of loneliness. You guys erased that and make it so much easier to go through this as a single youngin. Such a magical week of adrenaline, laughter, happiness, and love.