Gliomatosis Cerebri -- Insight and Help

Jen Moon
Jen Moon Member Posts: 1

I am writing on behalf of a good friend who -- after 2.5 months of tests and scans, including a small needle brain biopsy that showed absolutely no results -- was just today diagnosed with gliomatosis cerebri. Maybe I'm grasping at straws, but I am afraid he has gotten an incorrect diagnosis and will not receive the right treatment, as his doctors are currently discussing chemotherapy instead of whole brain radiotherapy.

In late August, out of the blue, he had a seizure and woke up in the floor. He had another one later that night and was taken to the hospital, where the doctors performed a scan and told him he had "tumor tissue" throughout his brain and brain swelling. A week later, just as they were taking him in for a biopsy, they told him they instead suspected encephalitis. They did another scan and found a small spot on his lung. All focus shifted to the spot and the possible diagnosis of encephalitis as a result of lung cancer. Ultimately, they told him it was not lung cancer and not encephalitis.

He improved massively after the first seizure and was able to go home. For three weeks, he was fine -- walking, dining out, enjoying life. Then he had another seizure that was more akin to a "blank out" not a grand mal, before which he experienced a bad smell and taste in his mouth and experienced numbness in his left side. He was not lucid for several days, but he was finally put on Prednisone and slowly recovered. He went home and again began enjoying life.

After his second seizure, doctors conducted a small needle brain biopsy but found nothing -- no cancer cells. They've consulted with doctors in other hospitals across their country (they are not in the US), though, and today he was given the GMC diagnosis. Earlier this week, he was taken off Prednisone.

He indicated that his doctor wants to discuss chemotherapy, but from all I have read, radiotherapy seems the path most doctors choose. I want to help him as much as I can, because I'm not convinced it IS GMC or that chemo will help. Can you experience such extended periods of good health as a GMC sufferer, being on absolutely no drugs other than anti-seizure meds and Prednisone? Is his doctor wrong to suggest chemo but not radiation?

His son died just four year ago from a brain tumor, and I truly believe that he and his wife have given up hope. He selected a gravesite this week.

Please help me give them hope!