I started radiation, Temodar chemotherapy and Velcade chemotherapy all on the same day. The following day I don’t think I left the bathroom. Temodar is the standard therapy for all newly diagnosed patients with a GBM. There is no other chemo that I know of currently being used as a standard of care. To read more about Temodar click here or here. Temodar is an oral chemotherapy taken nightly on an empty stomach to minimize nausea.
Well… I decided to sign up for the Velcade trial (Bortezomib) after reading a lot of literature, consulting with numerous physicians and trying to weigh all my options knowing what I was up against. The trial was being conducted through UCLA and having physicians at UCLA seemed like another benefit on top of the trial drug. To read more about Velcade click here and to read about the trial through UCLA click here. It is a drug that has shown potential to help in the treatment of GBMs and it is already approved to treat different lymphomas. Since it is already an FDA approved drug with limited, but certain side effects I decided to add this to my arsenal.
Combinations of these two chemos wreaked havoc on not only my body, but my blood. My counts were low from the first day and I ended up having to stop both chemos 5 months earlier than we were hoping simply because my blood could no longer tolerate the treatments. Typically blood counts are not a huge issue with these drugs, but every person reacts differently to every drug so one person might have a huge problem with nausea and hair loss where another person might not have a single symptom. I got the blood count issue along with nausea and a lot of different joint pains. Also during my treatment periods I would get exceptionally dizzy and sometimes nearly pass out when going from sitting or laying position to standing. Appetite was always an issue and medicinal marijuana was the ONLY thing that helped with this. Other side effects I experienced were:
-Fatigue- especially at the end of my radiation. Some days I could barely get out of bed and when I did I could only think of going back to sleep.
-Headaches- These continue even today and during treatment it was always frustrating and scary because the headaches mimicked those which I had before the surgery. There was more than one occasion I was fully convinced that the tumor was back.
-Weird tastes in my mouth
-Phantom smells (partially due to the surgery.)
It was 7 months of fun times to say the least!!!!!
Check out a stop motion video of 5 days of brain poison.