Diagnosis: Glioblastoma Multiforme, 2001
Last Updated: 10/12/2002
On September 19th 2001, my world came crashing down. Oh, I didn't know at the time that it was crashing down, but was soon to find out.
I was babysitting my granddaughter (Jordyn - 5 yrs old) and had her sitting on my knee when I woke up knowing that I had been unconscious for some period and was violently nauseous and had diarrhea. We determined by quizzing Jordyn that I was probably out only 4 or 5 seconds. My husband of 20 years, John, and my son, Kevin hustled me off to emergency where the doctors examined me from head to toe without determining any obvious cause for the episode. So after an overnight stay for observation, I was sent home, actually feeling fine.
Everything seemed to be okay for a couple of weeks until I began to have headaches that increased in severity as the days went by. I was diagnosed and treated for facial neuralgia but the headaches persisted.
On October 26th, a CT scan revealed a tumour in the right temporal and perietal lobes and I was rushed to emergency at the Regina General Hospital where Dr. Ekong, a renowned neurosurgeon, confirmed there indeed was a tumour and scheduled an operation. On November 2nd Dr. Ekong removed the tumour.
After a short recovery period, I saw an Oncologist, Dr. Mamud, at the Allan Blair Cancer Clinic in Regina and was told that I had a Glioblastoma multiform, grade 4 tumour. We (my husband John and stepson Doug and I) were told that average life expectancy for that kind of tumor, "with conventional treatment", was one year. However, we were also told that clinical trial treatments were available and success was very encouraging.
We then met with a second Oncologist, Dr. Salim, who explained and offered a clinical trial, which he felt, would almost certainly extend life expectancy and improve quality of life. I was told that my age (59) and excellent health would be very much in my favor. The said clinical trial which was a joint effort between the Mayo Clinic in Rochester and the Allan Blair Cancer Clinic in Regina is called NCCTGN007 and employed the drug ZD1839 NSC715055. The drug was to be administered by a once-a-day pill at home. This was our "miracle drug"
We then were subjected to 30 daily shots of radiation, beginning on December 6, 2001 and ending on January 22nd, 2002. But CT scans following radiation showed that the tumor had grown and on Feb 12, 2002 we were told that we were not thus eligible for the promised "miracle pill". We were devastated.
On Feb 13th the doctors began some " conventional" therapy treatment with Lomustine capsules (CCNU) , Procarbazine capsules, and Vincristine injections. This program was abandoned on March 14th when CT scans revealed that the growth was not inhibited. At that point we were told that there was nothing more could be done.
Finally, on March 20th, our Oncologist, Dr. Salim, offered a clinical trial named NCCTGN997b: A Phase Two Study of CC1-779 which held a lot of promise for patients recurrent Glibolastoma multiforme. The trial leader is Dr. Salim, along with members of the Allan Blair Cancer Center and the Mayo Clinic in Rochester Minnesota.
In the meantime we researched and found out about a clinical trial that held a lot of promise in Calgary. Again our hopes rose and we applied on April 22 . And again we found that we were not eligible .. this time because of the size of the tumor.
So we reverted back to the CCI 779 clinical trial and began one treatment per week beginning May 16th, 2002. The protocol called for physical exam, neurological exam, blood tests, and CT scan every 4-week cycle.
Along with my treatment I took 8 mg of Dexamethasone twice a day to control edema, 200 ml of Delantin twice a day to control seizures and Pantalock for the stomach. I also took Vitamin C, Vitamin E and a Multi-vitamin and 1000 ml of Colostrum twice a day. Colostrum is a herb which reportedly enhances the body's own immune system.
Prior to the start of this treatment, I experienced several mini-seizures that lasted 6 or 8 seconds. However, I have experienced no seizures for the past 4 months. Also the last 4 CT scans have shown no growth in the tumour.
During this treatment I have had reasonably good quality life. The main deficiencies include a loss of peripheral vision and difficulty with short-term memory, both of which appeared immediately after the operation. Although I have some difficulty walking, I get around just fine with a cane (and a grocery cart).
Throughout all of this My good friend and family doctor Dr Ron Young GP has been diligent in closely monitoring my general heath and quickly responding to any potential problems that arise.
Dr. Salim has expressed much pleasure with my progress and response to the treatment and is hopeful there will be improvement as time goes along.
As of this date my husband and I continue to function as a household with a minor amount of help from home care and a lot of support from friends and family. I'm certain I would not be here to-day but for the outstanding and unfailing support of my family. I cannot stress enough how important that family support has been to my physical and mental well being and healing.
Marg
Oct 11/2002
