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Recurrent GBM and Clinical Trials

Survivor_of_GBM
Posts: 2
Joined: Mar 2011

In May of 2009 I was diagnosed with partial complex seizures from ‘a lesion’ on my right temporal lobe of unknown origin. The next few months I struggled with finding the right dosage of Keppra and then Dilantin. All of this was not adding up for me as a healthy 42 year old young wife and mother of two. So I got a second opinion at NW University. I was diagnosed with a a Grade II astrocytoma. Two months later I was undergoing a craniotomy. The surgery was partially successful with 60% of the tumor resectioned. I was put under a watch and wait plan. I again struggled with the right dosage of anti seizure meds but after getting those under control I was able to return back to work in Febrauary 2010 and was even able to drive again-having gone 6 months with no loss of conscious from any seizure.In April 2010, the tumor had aggressively grown and I was again facing another craniotomy for what had been now graded a grade IV astrocytoma – GBM. In the summer of 2010 following the surgery, I underwent the gold standard of care with 7 weeks of radiation and chemotherapy. I checked out many books from the library and the overwhelming recommendations centered around nutrition. So I bought a juicer and decided to turn to a whole foods diet. I found an Energy Healer, continued my yoga practice, met with a Psychologist, saw an acupunctist, took supplements, exercised, did Qigong, did heat therapy in an infrared sauna, sound therapy, and oxygen therapy in addition to the Gold Standard of treatment – Temador plus radiation. The doctors often expressed their amazement at how well I was responding to the treatment. For the most part there was only some mild fatigue. I knew that my complementary therapies were my secret weapon. I lost some peripheral field of vision on the left side due the surgery and underwent some Vision Therapy. After 10 weeks I had regained my field of vision and was able to drive again. I did 6 monthly rounds of Temador. I returned to work in July of 2010 and have piled up 4 two-month cycles of NED no evidence of disease and no sign of progression with clear MRI scans following the last surgery. I have turned to a Vegan diet and noticed real improvement to my energy levels and got a bonus improvement in Cholestrol numbers. In January 2011, I requested to taper completely off the anti seizure medication because I felt there were some troubling side effects disrupting my daily life activities and effecting my work performance– confusion, forgetfulness, and low mental clarity. I had a small setback in February having a complex seizure. I am now trying to find the right dosage of anti-seizure medicine with the fewest side effects. After seven months of PFS and no evidence of disease my last MRI reveal two new small spots and I am considering the MEDI 575 clinical trial at Northwestern University. I feel strong and am optimist about the next round.

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