AR and Tom
Incredible Update on AR, a CARE Patient!
It has now been roughly 18 months since a seizure in the middle of the night changed AR's world forever. Three weeks later the pathology showed glioblastoma—an aggressive form of brain cancer. After surgery and chemo/radiation (which is the standard therapy for this type of cancer) AR's tumor recurred quickly, appearing again in December 2022. The growth rate of a glioblastoma far exceeds that of many other cancers, one study indicating the growth rate for untreated glioblastoma at 1.4% per day with an equivalent doubling time of 49.6 days. The brain's largest protector, the blood-brain barrier is a tightly knit network of capillaries which typically prevents toxins from reaching the brain. This same network, however, can make it difficult or impossible for many chemotherapy drugs to reach the brain.
"We were having a hard time finding a trial," said AR's husband, Tom. "We were kind of in a mad scramble. She has a great team at UW, but they weren't able to give us much guidance on finding a trial. AR's sister actually found the NEO 100 trial which the South Sound CARE Foundation was able to activate for her in about 3 weeks. "If we had gone through an academic medical center there would have been a lot of red tape and could have taken up to 6 months to activate."
The NEO 100 drug is dispensed through a nebulizer mask, similar to a CPap machine for sleep apnea. "It's wild because it's an alcohol that is derived from herbs and blended in a solution that comes in canisters which we keep in the fridge. We draw out 3 milliliters and mix with 3 milliliters of water and put in nebulizer which she breathes in four times per day,” Tom said.
After five cycles of treatment, the latest scans show that AR's tumor is shrinking. "I feel extremely reassured that I have an effective treatment that is relatively easy for me to take and which I appreciate so much. I feel overjoyed that there is something for me that is working. My scans say that it is working," AR said.
This life-changing treatment is possible because of CARE supporters like you! Thank you for giving AR hope!
UPDATE // January 2024
CARE Patient A.R., now in Cycle 12 of treatment, continues to demonstrate a remarkable response to NEO100 treatment. Her latest scans show no signs of disease progression and her tumor continues to decrease in size. Prior to treatment, her tumor measured 4.26cm x 1.89cm (the size of a lemon) and at the end of cycle 10, it measured 4mm x 11mm (the size of an acorn)! A.R. has experienced a substantial reduction in symptoms, notable improvements in mobility and speech, and has even resumed her yoga practice!
The Results: A.R.s tumor decreased from the size of lemon to the size of an acorn at the end of cycle 10.
Her husband, Tom shares, “Yoga has continued to be a lifeline for her. She went through a difficult period in the fall when tapering her steroid led to mood and energy changes. What really pulled her out of it was resuming her yoga practice. She has a great community at one of the local yoga studios. Prior to her diagnosis, she was on the leaderboard for most classes attended. When she resumed her practice in November, she went to the studio nearly every day for a month, and recently she has been going twice a day and feeling more of her strength and coordination come back as her parietal lobe heals.”
The ability to self-administer daily treatments from home allows A.R. to dedicate time to what matters most–being with Tom, her loved ones, and engaging in activities she loves within her community.
