Last updated:4/252009
My story of having a tiny Glioblastoma found early, then learning 7 months later it had a Oligodendroglial component
“A better situation”
For me, April 28, 2008 was like no other day, yet it started with the usual routine. Rising early, off to work, driving instead of walking or riding my bike. Then, off to the dentist after work, followed by a visit to a friends’ house. I have enjoyed perfect health for 50 years. I am an energetic, physically active rehabilitation nurse, who works full time, is in good spirits, and has a wonderful family and friends. All that changed suddenly at my friend’s house that evening; I began to feel dizzy and faint, like my blood sugars were low. I asked my friend for a drink of orange juice and quickly drank it. That was all I remembered.
I woke up to paramedics putting an IV in my arm again boosting up my sugar with IV. They told me my blood sugar was 2.1 ( very low) my son and husband were sitting across the room with looks of horror on their faces. My friend Pat told me that I had suffered a small seizure, but before I knew it I had passed out again. At the hospital that evening, a cascade of tests began, culminating in computed tomography (CT) and magnetic resonance imaging (MRI) scans. At this point I felt certain that this was all a waste of money and resources and that it would be in everyone’s best interest just to send me home. No one was able to tell us if my seizure was low blood sugar related, and the tumour was an incidental find.
When the MRI was done, my husband and I were shocked to learn that it showed a small “ring enhanced lesion” on the surface of the brain that warranted further investigation. The Neurosurgeon came in and told me it was the size of a small green pea 1.2 cm ( ½ inch) and located on the surface of the parietal lobe. He said that he was leaning towards the begine side, and I could do one of three things. 1) wait and see and do an MRI in a few months, 2) do a biopsy, or 3) remove it. I opted for the removal. He said that he concurred and that it was located on the surface, small and would be easy to remove.
Next, I endured an anxious wait for my turn in the operating room. I tried not to worry, but that was impossible. On May 9, 2008 I had my surgery and the Neurosurgeon reassured me several times that he was able to completely remove it. He stated “it was small - easy in and easy - out” (verified by MRI afterwards) One week later, the pathology report arrived, and the neurosurgeon reported to us that “it was not the report he had expected. He reported to my husband over the telephone it was a small gleoblastoma that was treatable, but difficult to treat”. He reported that this is a chronic condition that will need to be monitored on a regular basis with frequent MRI’s., and it is unknown if it would return. My medical team reassured me that I had a good scenario, due to the early findings, size, location, total resection and aggressive early intervention and aggressive treatment.
With no neuro deficits either before, or after surgery, and a KPS score of 90+ Radiation and Chemotherapy started exactly 1 month after surgery on June 9, 2008. This is the Standard of Care in Canada. For me my radiation was three beams in – in three different locations directed toward the removed tumour site. It consisted of 6 weeks ( 30 sessions except on weekends ) in conjunction with Temazolomide 140 mgs every day, strictly taken one hour before each radiation therapy session. Then Temazolomide was continued on the weekends during the 6 weeks of radiation.
After the 6 weeks, I had a month rest from the treatment. I was very tired, but I was able to carry on normal activities of daily living, including telephone consulting for my job, but some of my blood counts were a lower than they had been earlier, but quickly recovered.
On August July 9, 2008, I enrolled in a clinical trial for one year, taking Dose –Intensive Temazolomide 170 mgs taken 21 days out of 28 every month. ( 7 days rest once per month ending Aug 2009)
In Canada MRI’s are done every 3 months, and to date all mine have been fine - reviewed by my Neurosurgeon and the Cancer Team.
In September of 2008 I started back to work part –time gradually building up my hours. I also started going to physiotherapy to help rebuild back my physical strength and endurance, as I was de-conditioned after many months of taking it easy.
As soon as I could, I researched for support and answers. This began the almost daily rollercoaster of emotions that I still experience. In the very beginning I was reassured by many of members of my medical team including many scientist friends, that the current treatments being used to today are the best they have ever been to treat this disease, with new novel therapies coming out at a rapid rate. I was also told that the current stats on this disease are out dated by 5 years, and do not include the current treatments being used today.
7 months later, On Dec 11, 2008, during a regular visit with the Neurosurgeon, I learned that my tumour was Gleoblastoma with a Oligodendroglial component. ( GBMO). The next day I met with the Oncology team who reassured me that was a better tumour than a straight GBM, as I was told that GBMO’s are more chemotherapy sensitive and respond better to treatment. I also learned that my tumour had been sent away for further molecular analysis for LOH on 1P/19 ( I have yet to learn about this ) I am told this information is critical to find specific therapies that will respond directly. I plan to track down this report. I also learned that it is rare to have a GBMO, and unusual to have such a small tumour found early. The Radiation therapists ( both with 30 years experience ) at my clinic told me that they had never treated a tumour the size of mine before.
I must report that as of Jan 3, 2008 I feel completely back to normal with no seizure activity since experiencing the initial seizure, or any ill effects from the treatment. I still have bouts of mild fatigue, which I attribute to continued use of Dilantin, and the after effects of radiation from 7 months ago. My driver’s licence has been reinstated, for which I am grateful. I am still waiting for my hair to fill in.
I have regular MRI’s every 3 months, and am assertive, and proactive in my care and treatment.
There does not seem to be regular screening for this disease yet, unlike for breast, prostrate, and colon cancer I would like to see more actions taken towards prevention of this disease, as it would cut down on the emotional trauma, and expensive hospital costs.
I hope my information has been helpful. As part of my research, I have learned that there are many, many positive stories out there ( including stories from this site ). There are stats that have not been measured yet on the most up to date and current treatments. Please don’t scare your self as I did - reading numerous an articles from the internet that are not validated. Valid sites such as this, which can provide the most updated information including the people who have contributed their stories and volunteered their time and support, is by far the best way to keep connected. Thank you – Jerry, Rose, Ben, Peter, Kate, Russell and Al Musella, and the others.
Sincerely,
Robin C.
Update 4/25/2009:
I have had a possible reoccurrence on the noted on the MRI of about .5 cm and I am scheduled for surgery on Thursday April 30. I would like to hear from some one who has had the same and could share their experience with me"
