November Update:

Kent underwent skull surgery at the Mayo Clinic. Upon arrival, Kent proceeded to walk through the doors as he was sent to the 9th floor to sign in. When Kent walked around the corner to his room he found the Alberta Coat of Arms hanging on his door. He soon discovered Dr. Parney had placed it there for him and that put a huge smile on Kent’s face. That smile is still on Kent’s face after another successful surgery.

To put things into perspective:

1. They removed approximately 80 grams by volume, or two man handfuls, of tumor tissue from Kent’s skull;

2. He has 24 large stitches in the shape of a "T" on his head (he has nicknamed himself the new Mary Shelley's Fran-Kent-Stein);

3. He had a 25 % chance of having temporary neurological problems, an 8-10% chance of permanent neurological problems, and a 1-2% chance of coma or death.

Kent is doing very well.  His body rhythm is getting back to normal, and he is sleeping much better at night.  His surgery scars are healing nicely and he had his first hair cut yesterday since surgery.  His collar bone has healed quite well - it just couldn't heal properly before because he was on chemo.  Now that he's off the steroids, his mood is improving and his appetite is returning to normal.  Kent's just starting to get back into his workout routine, which is really important so he is strong for this next chemo journey.

Kent has been a ball of energy since his surgery.  His brain must have been working overtime to cope with the tumor, and now that most of the tumor is removed, his brain hasn't slowed down yet.  He's having trouble sleeping, as his mind is racing a mile a minute.  He likens it to having a software update – ha!  Other than that, he seems to be doing very well.  His stitches are healing, and he only has a bit of weakness on the upper left side of his body - which he believes is from his broken collar bone(makes sense).  We are really looking forward to him starting chemo so we can nip the tumor in the bud before it starts to grow again.  It's amazing to see the difference in him since the surgery.  He's the ‘old’ Kent again. He’s not allowed to lift anything over ten pounds for the next six weeks, or submerge his head under water.

Kent saw Dr. Easaw at the Tom Baker Centre. Kent agrees with the doctors at the Mayo Clinic, that Avastin chemo is the next course of action to take. In Edmonton Kent was originally told that the Avastin chemo would be taken every three weeks at a cost of $2,500 per treatment.  This has turned out not to be the case.  Dr. Easaw (and the Mayo Clinic) administers Avastin every two weeks, and when Kent spoke with the maker of the drug, Roche, he was advised that the cost is approximately $5,000 per treatment, or $10,000 per month.  Kent qualifies for a 25% rebate from Roche, so Kent will pay for the treatments up front, and then be reimbursed approximately $2,500 per month, after the fact.  We are hopeful that the drug will be approved by Health Canada and Alberta Health Services in the near future. Avastin is currently approved for colon cancer, but not yet for brain tumors.  Avastin is expected to be approved by Health Canada in approximately three months.  Then each of the provinces will determine if and when they will approve the drug as a treatment for brain tumors.  If the Alberta Government approves Avastin as a brain tumor chemo, there will be no cost to Albertans to have this medication.

Kent went down to Calgary for an MRI, which will tell if the tumor has changed since the final MRI they did at the Mayo Clinic, at the end of Kent's surgery. Kent headed back to the Tom Baker Centre so he could have his Avastin chemo IV.  The process went very well and Kent didn't experience any negative side effects.  Kent has also had to start taking Etoposide (VP-16) chemo pills, “which he is not too happy about because this is a ‘big pink horse-pill’ that 'really wears him out'.”  He will continue taking the Etoposide chemo pills on a daily basis as long as the Avastin treatment continues.

His next Avastin chemo IV treatment will be on November 20th at the Cross Cancer Centre in Edmonton.  He will have another MRI on November 26, to see if the combination of Avastin and Etoposide chemo’s is having an effect on the remaining tumor.  “Dr. Easaw contacted the company that makes the drug, Roche, to ask for a subsidy for us.  The Roche representative contacted us to obtain Kent's drug insurance information and then he coordinated a 3-way conference call with Kent.  The insurance company will not consider covering Avastin if it is administered in a hospital setting, because they believe the hospital should cover it under their budget, and Dr. Easaw will not agree to have the drug administered in a private clinic because he cannot oversee Kent's treatment in a private setting.  It's probably all a mute point anyway, since Avastin is not yet approved by Health Canada and, according to the social workers at the Tom Baker Centre, no drug insurance company has yet to cover Avastin for a brain tumor patient” stated Kent’s wife, Deb. "We are going to investigate the possibility of lobbying the federal and provincial governments to approve Avastin chemo for brain tumor patients. We will also be following up with the Director of Patient Concerns with Alberta Health Services."

Mayo Clinic Brain Tumor Research Study

The Mayo clinic has invited Kent to participate in a Brain Tumor Research Study.  The study involves looking at how medical problems, environmental factors, family history, genes we inherit from our family, and other factors affect the risk of brain tumors.  These areas will be compared to other individuals without brain tumors.

Kent has agreed to participate in the study, so the Mayo will be mailing him with a blood sample kit and a questionnaire.  The Mayo will also be analyzing one of his extra pathology slides from his last surgery.  The Mayo Clinic research team will contact Kent at various times in the future to check on his health and to offer additional opportunities to participate in brain tumor research studies, as they become available.

We are happy that Kent is able to participate in this important research.

All updates have been provided by Kent & his wife Deb. We will continue to provide more updates as they become available to us.