Results - April 9, 2008

First of all, thank you to so many who have been sure to let us know you are thinking and praying for us this past week as results day approached. It is always a difficult week.



Let me start by informing you Brian has not been feeling great. He has suffered from some serious insomnia that seems to only be remedied with sleeping aids - not that there's anything wrong with that- but we would certainly prefer he get natural restful sleep. He has had some new "sensations" on the right side of his body and that is about all the more detail I can give you because I don't understand them and he can't explain them any better. He can't explain them any better because it is simply a strange, crazy type of cancer that slowly inflicts different parts of his body depending on which part of the brain is affected. It is not like he can say, "my arm hurts" or "I can't breathe well because of my lungs." Rather, he gets slight headaches (are they sinus or something worse?) and feelings or lack of feelings in his body parts for short durations at a time (Did he sleep on it wrong, did he over use it, or is it something worse?) It is just very difficult to grasp and explain.



Yesterday, we heard from the Stanford team. The areas that changed last time have continued to change. It COULD be radiation effect, but the team tends to hypothesize it is tumor (still shudder when I hear the word) progression. They recommend a change in systemic approach (English: a new chemo (I had to ask, too, don't feel bad)). Dr Recht, the neuro-oncologist at Stanford Cancer Center recommends Avastin (anti-angiogenesis: works to deplete the blood supply to the target area) in conjunction with a chemo in a different family than the Temodar Brian has been taking, namely CPT-11 (Irinotecan). These chemos are administered via an IV drip in the clinic. It has been 8-1/2 years since Brian received a chemo IV drip.



The Peoria doctor gave us the results today. Pretty sad when you can hear from across the country AND their specialist board/panel has reviewed your results AND gets back to you with a consensus before your local doctor even sees you initially. That just gives you an insight into the type of care Brian receives here - very adequate, but not very timely. Dr. G and the Peoria radiologist are in agreement with Stanford that we COULD be seeing radiation changes, but need to treat it as though it is tumor *shudder* progression and change Brian's treatment plan. Dr. G. has used Avastin and CPT-11 on other glioblastoma patients who stopped responding to Temodar. The Avastin is an anti-angiogenesis (agent attacking growing blood vessels) and the CPT-11 is a more standard chemotherapy. Brain tumor patients using the cocktail have shown favorable MRI results, but the clinical results are yet to be determined (translation: increase in prognosis, change or decrease in symptoms. I had to ask again, too.) due to its more recent use with brain tumor *shudder* patients.

The Avastin and CPT-11 will be administered in the clinic every two weeks. Side effects are pretty typical for chemo patients. Brian will also have blood drawn every two weeks to administer his levels - white cell, red cell, platelet, liver, etc. The CPT-11 takes about 90 minutes to administer. The Avastin takes about an hour. There will also be an anti-emetic administered (no puking allowed drug. That one I knew from the past.) This new adventure commences Monday, April 14, 2008 at 8:30 am.


Our reaction to this news:

Not overly surprised given how Brian has been feeling (both)
Sad (me)
Hopeful (both)
Frustrated (both)
Resilient (Brian)
Scared (me)
Withdrawn (me)
Crabby (me)
Comforting (Brian)


Terrible role-reversal in our reactions, I realize, but this often happens. When one of us reacts a certain way to news, the other picks up the slack. The roles will probably reverse or we will meet in the middle soon. It is early in the process.



I don't have a lot of words of wisdom or insight. This is very serious, but we have to deal with it with whatever resources available. We need to be lifted up in oh so many ways.



I try to say optimistic and encouraging and uplifting on this blog. I do this for good reason. First of all, OCCASIONALLY, Brian actually reads what I spend all this time preparing. Also, I re-read what I write and what YOU write A LOT - for encouragement, insight, laughter, love, validation, hope, etc. This needs to be a source of constant hope for us. Make no mistake, what Brian needs is a miracle. Science will not heal Brian from what he has. However, science alone did not heal Brian in the past. Our Savior healed Brian via various medical and scientific avenues. This time, science has little left to offer. Fortunately for us, our Savior never runs out. We know we cannot will God into healing Brian. Regardless, we hold tight to a higher purpose and meaning for all of this in our lives. We simply have to.


Now I gotta go figure out how to explain that to our boys.


KEEP BELIEVING