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Journal

January
17
2020

18 Month Scan is Unremarkable

I had my 18 month PET CT scan yesterday and Dr. de Vos texted me shortly thereafter (see text chain below) that I had an excellent scan. Even though I could feel no tumors and had no reason to think I had a recurrence, it was so wonderful to get the confirmation I am still clean. According to the trial protocol, my scans will move from quarterly to every 6 months now. I also got the news that my immunoglobulins levels are normal and I no longer need to go in monthly for IVIG infusions. I will retain my port because I still have no veins in my arms after 5 years of dozens of infusions directly into my arms so I will just need to visit the nurses at UCLA once per month for my port to be flushed. While I will be with Dr. de Vos for a few weeks in Nepal in April, I won’t be seeing him medically until my next scan in July, wow that’s a milestone.

Wednesday, I spent many hours with the photographer/journalist from ABC7 news. He recorded me on a hike in Fryman Canyon, then went with me to the Santa Monica stairs and recorded me there and also tagged along and filmed me while I was buying my trekking gear for the Everest Base Camp trek at REI. Real nice guy, who had a dad with blood cancer. He interviewed me extensively on camera and I felt like I just blathered on for hours but hopefully ABC will put together a compelling piece from my blathering. They are to notify me when the piece will run and I will post it here. He said typically the stories appear on the ABC web page so I will hopefully also be able to include the link.

Two more people I have been helping with their CAR-T had clean scans this week, such awesome news for more people who were very ill. 

It seems likely that the FDA will fast track the approval of KITE CAR-T for follicular NHL. This this will probably mean elimination of a phase III and potentially approval by the end of 2020. Now that they are doing a much better job at eliminating the neurotoxic side effects I experienced, they are moving to do CAR-T in an outpatient setting which will greatly reduce the cost of the procedure. 

Hoping to visit Kite Pharma in February to film where my cells were genetically modified, just waiting to hear back from the legal department at Kite.

Thanks for reading and have wonderful weekends.

xxxlaurie

P.S. I simplified the URL for my LLS fundraiser, pls visit bit.ly/cartsupergirl

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