Peter Lalor

« Dexamethasone be going | Main | My delayed update »

December 30, 2005

Nutrition and an MRI

Around six months ago Jennifer had run across a nutritional PhD, Jeanne Wallace, whose partner had been diagnosed with a tumour and given six months to live. She’d focussed entirely on stopping the tumour from growing with nutrition and supplements and her partner is doing fine now—nine years later. Jennifer wanted to get in touch with her but before she could my tumour suddenly grew rapidly and I underwent my neurosurgery of the time. As soon as she could after all that, Jennifer contacted Jeanne and they had a very connected conversation. She was very pleasant and clear: she has and does work with many, many people with brain tumours. Some live and some die. Honesty I like, and given that usually ya just die, she’s doing great. Jeanne sent us a form to complete giving details about my body, diagnosis and diet. After she did we received back a very detailed document covering tackling a tumour, my document customized for and focussed on my tumour type. Some supplements were highly recommended for me and I take them all. Some foods were suggested to be avoided, such as all dairy—while butter is fine—and sugar, which I already dropped at around age twenty.
She recommended starting with neurosurgery and following with radiation and, as of only recently, chemotherapy, given the recent development of the medication Temodal. Given that I’d just had my second neurosurgery and was concurrently having radiation and Temodal, I was doing pretty well. Aw hell, as I hadn’t even eaten sugar for fifteen years or so I was already right on track.
A few weeks ago I had a little numbness in my arms and legs very occasionally. Then one evening I was having unusually frequent seizures and went into our bedroom to lie down. There I became unable to talk—I could understand almost everything Jennifer said but could only respond with gestures and shrugs. She had a friend, Bruce, come over who is a nurse and was in the hospital after my initial grande mal seizure, as he lives very close and he and Jennifer discussed whether I should be taken to a major hospital. I was able to make clear that whatever was fine. Jennifer decided that as we already had the same drugs that they’d give me we could probably stay home. She gave me a drug, clonazapam, that is very similar to diazepam (Valium) and would cut the seizure within a half hour. I sat with a visiting friend, Chandradeva, and Bruce who talked with me to my shrugs and gestures until I began to be able to speak, a little then more and more, very quickly. After so many seizures one mainly sleeps for the next 24 hours, which I did. After this Jennifer arranged with Dr. Laherty in Brisbane, the neurosurgeon performing the dendritic cell vaccine trial that I participated in, that I get another MRI. I had it a couple weeks ago, and although while presumably given the holidays we haven’t heard back from Dr. Laherty, the analysis comparing the scan with recent previous ones says that there are no changes in the past two months.
I’ve now gotten down unneeded dexamethasone by three quarters, to one quarter of a tablet a day—today. Each day Jennifer trims it a little more. Jeanne Wallace’s information document includes a page on getting off it, as my difficulties are shared by many others. She recommends various supplements for it and we’ve found that by my taking a lot of one I not only no longer have seizures very often at all while cutting it back, but we can even cut it more quickly.

Posted by Peter at December 30, 2005 09:37 PM

Comments

Post a comment