My December scan went so well that I really had no concerns about my March quarterly scan. About a month before my scan, my friend Liz told me about a NBTS (National Brain Tumor Society) “TED” style talk up in LA on the same day as my scan, only at 6:30 pm when I had to leave my house at 4:30 am! Since I was already going to be up there, I figured I could always hang out with a friend or two or go spend a few hours up at my inlaw’s house.
So I left slightly late at 4:45, an that extra 15 minutes made the difference of 30 minutes and I was super stressed out about being late, as I worry about being denied my scan and having to return another day for my scan and appointment. Luckily they still allowed me in and my scan went well. I actually enjoy laying in the MRI machine because I can be in my own head listening to praise music and praying over my brain and cancer, plus anything else that may be on my mind. And today it was my scan followed by my doctor’s appointment to get my results which is why I drive the 2 plus hours up to Beverly Hills to get my scan and results from my oncologist the same day! I am not strong enough to go somewhere close by and be forced to wait a week for my results.
When I saw my oncologist we discussed changing my antiseizure meds as Keppra which I am currently taking has two common side effects which are tiredness and moodiness both of which I am trying to avoid. He showed me my scans and one spot that was new, most likely an infarction stroke (a very small collapsed blood vessel from radiation). This wasn’t what I wanted to hear as my prior scan showed that the 5 or 6 infarction strokes I had before had all gone away, so I, of course, was hoping it would be the same! Knowing that the previous spots had disappeared, I wasn’t as fearful as I had been in the past. This spot is around 5 or 6 millimeters in size, once it gets to 1 centimeter, they’ll biopsy it to make sure it’s scar tissue, so it’s still a concern of mine.
After my appointment, I went to the pharmacy to get me a new prescription, but it was $500 for one month and that was with a good coupon, so I decided against it and switched to a mailorder of my Keppra so that I don’t have to get it every month from the pharmacy, I will now get it in the mail once every three months!
After my appointment, I had my labs done and wanted to meet up with a high school friend, but she had a work meeting. And wouldn’t you know as soon as I got on the freeway to go up to my inlaws house, she called wanting to see me because her meeting finished early, so I exited the freeway and headed towards FOX studios in Century City. After a quick salad and fried cauliflower and a skipped opportunity for a selfie, I was off to my inlaws house up in Granada Hills which worked out perfectly as one of my good cancer friends lives and works up there so I hung out with my inlaws and then grabbed Starbucks with her, where I had tea since I’m not a coffee drinker. It was wonderful catching up with her.
And here is where the most amazing part of my day comes to play. Coronavirus was a fairly new concept today in the US, however at the NTBS (National Brain Tumor Society) TED talk called “Big Wines and Big Ideas” we started doing the elbow bump instead of hugging and shaking hands. Funny thing that we thought nothing of until a week later!
Anyhow, I met up with my brain cancer friend Liz for the first time ever seeing her in person! We did hug and then joke about elbow bumps!
I am not a wine drinker, so I definitely didn’t go for the wine, but did have my fair share of Fiji waters! So for me, it should have been called great water and great ideas! I’m not too sure what the wine was for, maybe some marketing thing but they did do some giveaways, which I did not win!
After a great deal of small talk with Liz and a few others I had the privilege of meeting, the program started with an introduction of key players in the NBTS as well as the doctors who were going to give 10 minute TED talks. The experts were at 4 separate belly tables where we all switched speakers every 10 minutes. The first speaker I heard was Faramarz Yousefzadeh, attorney of 15 years who lost his wife to brain cancer, co-founded Auspex Pharmaceuticals (a San Diego drug discovery company), and is the current chairman of the Board of Global Coalition for Adaptive Research, the sponsor of GBM Agile, the world’s first Global Adaptive Trial for GBM (Glioblastoma Brain Cancer). The NTBS provided a $750k award to this coalition.
The second speaker I saw was Christine Brown, Ph.D., a Heritage Provider Network Professor in Immunotherapy with City of Hope in Duarte, CA. Her focus is on Chimeric Antigen Receptor (CAR) T cell therapy for cancer, with particular focus on its application to brain tumors, Brain tumor immunology, and Glioma cancer stem cells. Being a woman I really enjoyed hearing a woman speak and was happy that she was there for our community!
The third speaker I listened to was not someone who was new to me like everyone else. Timothy Cloughesy, MD is a Neuro Oncologist at UCLA where I was treated when first diagnosed with brain cancer. If you go back to October of 2013, you will see why I changed hospitals. Although I am no longer at UCLA, I still have the utmost respect for them. I enjoyed hearing about the molecular therapies with a novel clinical trial design that Dr. Cloughesy is focusing his research on. His goal is to provide individualized care for his patients using molecular biology.
The final speaker, I saw, of the night was my favorite. Paul Mischel, MD is a physician-scientist whose expertise is in molecular pathology and he completely blew me away. He makes me want to raise funds for him alone as I completely felt that he is who will come up with a cure for GBMs. In fact, he believes that he already knows the cure, but has to do clinical trials on it. Dr. Mischel said there is a drug in every pharmacy that if given in a double dose kills brain cancer in lab mice! THIS. IS. HUGE!! This is what I have been waiting for the past 8 years to hear. This news gives me so much more hope and I can’t wait to see what happens with his research. You know I’ll be watching and updating you all on what I find out.
What a wonderful day this was although it was so long. I now feel so informed on where we are in getting a cure for GBM and know the importance of immunotherapy. Thank you for taking the time to read this very long post!