Wednesday, October 19, 2011

(posted by Greg)

Monica and I attended an evening session of the Brain Tumour Support Group at the Cancer Agency. I am wondering if you can get "hooked" on these sessions. I find that I look forward to going to them and I am invariably moved and stimulated by them. Monica didn't feel so strongly about going but was happy to go and always seems to like the sessions.

Wednesday's session had some different attendees and was interesting from that point of view. Once again there were some moving stories and a certain "bonding" seems to take place from the sharing of those stories. I think too that everyone feels not so alone when they hear the stories of others.

When Monica was in active treatments and had something to do every day, we felt like we were doing something to combat the cancer. We realize that by following our nutrition guidelines etc we are still fighting the cancer but it is much less tangible. I think that participating in the group sessions makes us feel like we are doing something.. (This might explain why I like going?)

One of the benefits of going also is the hope that is engendered when you hear some success stories. The following is an excerpt from a newsletter that was handed out (and so is not confidential) which tells the story of a young man who was diagnosed in February 2004 with a tumour similar to Monica's:

" A week later, my family and I received the devastating news : grade 4 astrocytoma (glioblastoma), a fast growng and aggressive form of brain cancer with a poor prognosis. It was hard for us all to hear. After giving me the news about the prognosis, my surgeon...drew a survival curve explaining that although this curve represented the statistical prognosis, I was an individual and not a statistic. He said that I could be on the long-term survival end of the curve, and I wouldn't be the first person to do that . It was from this point that I made the decision to take an active role in doing whatever I could to be part of the survival end of that curve.

Treatment began a month or so after diagnosis: six weeks of radiation with concurrent temozolomide (TMZ), chemotherapy pills that looked like poison to me. I was not able to complete the chemotherapy regime because of the effects on my blood cells in the fourth week, but I thought that perhaps this was a sign that my body was very sensitive to the drug. In the fall of 2004, magnetic resonance imaging (MRI) showed that the tumour had indeed shrunk, but a year later the tumour grew back and I enrolled in a clinical trial. The clinical trial drug I was given, lapatanib, proved to be ineffective in treating brain tumours. So, I started back on TMZ treatment again for the first eight months of 2006, and thankfully, this was effective in shrinking the tumour. It has not recurred since then.


I believe that a combination of my tumour's biology and its responsiveness to treatment, but also my personal fight against the cancer, resulted in this success. My personal battle has involved meditation, exercise, prayer, art, top-notch care at BCCA and most importantly a very close network of family and friends.

This is one of the stories that gives me some hope (particularly because of the many similarities to Monica's situation).

For more information on this young man, Yaron Butterfield, see this link: www.braintumour.ca/2367/the-many-faces-of-spring-sprint