What a great adventure!
I recently listened to a Society of Neuro-Oncology podcast titled “IDH mutant gliomas; SNO consensus Review“. The podcast was basically a prompted question and answer session hosted by Dr. Ankush Bhatia with doctors Julie Miller, Nicolas Gonzalez Castro, Samuel McBrayer … Read More »
I have been participating for much of this year, representing the viewpoint of a brain cancer care partner, in the Low Grade Glioma Registry’s OPTIMUM research initiative. A couple of months ago I learned this initiative was part of the … Read More »
With Susie being immune compromised, we’ve been careful as to what we do. Over the last two years we had not flown to visit friends or family, but we have had friends/ family come stay with us. Our youngest also … Read More »
With easier access to patient medical records, via online portals, and the ability to search terms and phrases in medical literature, I feel I’m inching closer to a better understanding of neurology, oncology and trauma of the brain. I don’t … Read More »
When Susie was diagnosed with recurrent brain cancer, a Secondary Glioblastoma (IDH1-mutant), we discussed her treatment options with her Neuro-Oncologist at MD Anderson Cancer Center. We looked at clinical trials, surgery and other options. Her case was brought before a … Read More »
Yesterday was Susie’s last day of physical therapy. It should have been a happy day, as she has progressed a lot in the last year. She is physically stronger, is more aware of her balance and now can continue with … Read More »
Masks have become a partisan badge one either does or does not support. There does not seem to be nuance in the discussion regarding the context and the participants involved. Some of the most vocal view this discussion as good … Read More »
Today is our wedding anniversary. We normally celebrate by going somewhere special. With Susie deaf in one ear, we like early reservations. This way restaurants tend to be quiet. With the pandemic and Susie being immune compromised, we have not … Read More »
It’s been two months since my last post. We were supposed to join my family in New England for Thanksgiving. I was combining the holiday with attending the 26th Annual Meeting and Education Day of the Society of Neuro-Oncology. I … Read More »
This week is the 15th International Brain Tumour Awareness Week, held from Saturday 30-OCT-2021 to 06-NOV-2021. This event is organized by the International Brain Tumour Alliance, and is intended to encourage activities that draw attention to particular challenges of brain … Read More »
This last week, I was chatting with a medical specialist friend. We were discussing clinical trial data, COVID-19 and confirmation bias. The conversation drifted to real world data (RWD)/ evidence (RWE) and observational studies with historical controls. While I am … Read More »
This week was the yearly Head to the Hill event, organized by the National Brain Tumor Society. I participated in the trainings and today joined meetings with senate and congressional staffers. It was the first time I physically met with … Read More »
With my work, I often interact with Physicians, Hospitals and Life Sciences companies. Seldom do my discussions center around brain cancer, but I often think about how whatever I am doing could be applied to cancer patients like Susie and … Read More »