Help Brian Fight Lymphoma!
I will not sucumb to Primary Central Nervous Lymphoma! Recently accepted to transfer to a college in Hawaii to finish my Bachelors, my future was bright...until I started to experience painful headaches, nausea and eye pain. I went to the doctor and was diagnosised with cluster headaches, even though I am 24 and have never had them before! After two days taking pain and antinausea medication with no improvement, I was rediagnosed with migraine headaches and put on even more medications. After no improvement, my mother (who is a fighter and my greatest champion) took me to the Emergency Department where the neurologist said it was caffeine withdrawl headaches, but did an MRI even though, "There won't be anything there." But there was.
I had a tumor bigger than a golf ball. Because of the size of the tumor which was putting pressure on my brain, I needed surgery. Less than three days later on December 4th, 2014, my neurosurgeon removed 60% of the mass and determined that it was Primary CNS Lymphoma, later confirmed by pathology reports. The surgery was more than 10 hours. Because the surgery was so long, I began having a condition which required the breathing tube to be left in over night.
Luckily all the follow-up tests were negative for any spreading to my throat, chest, abdomen, pelvis, eyes, spinal fluid and bone marrow.
Primary CNS Lymphoma is a rare cancer, accounting for 1% of lymphomas. It is aggressive and likes to "hide" in all areas of the brain. The best form of treatment is Blood Brain Barrier Disruption (3BD) which is available at two hospitals in the United States. Luckily I live 20 minutes from one of the hospitals, Oregon Health and Sciences University, in Portland, Oregon. With Blood Brain Barrier Disruption, I have a 70-80% chance of total remission!
Because of the aggressiveness of the cancer, I need 12 treatments. I have already had two. The treatment is intense. Day one I am admitted to the hospital, have a hearing test, MRI and EKG. After the tests I receive Rituxan, a chemotherapy medication. Day two and three are 3BD. The neuro oncologist puts a catheter in my femoral artery and gives me two chemotherapy drugs, Methotrexate and Carboplatin, directly into the tumor in my brain. After I get back to my room, I receive two doses of a medication to protect my hearing. The medication causes severe headaches and nausea so I'm medicated with Haldol, Ativan and Benadryl before each dose. Day four I drink a lot of fluid to flush the chemo from my body. If my chemo levels are below toxic, I can go home. I don't remember three days of the five-day stay.
The treatments are very expensive $20,000 - $40,000 each, but they're working. The tumor has already shrunk 30%.
With the love, faith and support of my family, friends and people like you, I will BEAT PRIMARY CNS LYMPHOMA!