Monday, March 17, 2014

If I Only Had a Brain

I went Off to See the Wizard, and believe me, Oz is really something. He answered all my questions and explained things I didn't even know I didn't know. And he insisted we take a closer look at my brain.

So we did. And the results?

I have a brain, and it is unremarkable.


Xalkori is an amazing drug, but its Achilles heel is the brain, since it cannot cross the blood-brain barrier. If one single stray cancer cell makes its way up there, the cancer can flourish in a medicine-free environment. Half of the people whose cancer progresses on Xalkori have their first progression in the brain.

My wizard insisted that I have an MRI of the brain, since I have only had head CTs up to this point, which do not reveal the same level of detail. His philosophy is to catch the little buggers when they are tiny to keep ahead of the cancer rather than waiting until they are causing symptoms. Pretty smart, I'd say, but unfortunately not how things are typically done.

Hopefully the team in Oz will help to change the status quo.


William Van Gils said...

Too little too late for us, crinzotinib was able to keep my girlfriend's cancer at bay for 5 months, In fact her cancer is almost undetectable I'm her lungs. Although In the past two weeks Hitomi started noticing headaches and weakness. Her MRI scan last week revealed 15 brain Mets, too big for targeted radiation. Today she is in emergency room having treatment for brain swelling, numbness, dehydration. Everything happened very quickly, oncologist cannot believe it.

Tori Tomalia said...

William, I am so sorry to hear this. I hope they can deal with the dehydration and swelling quickly. Will they use whole brain radiation? Best of luck to you both, you are in my thoughts.

William said...

Hello Tori, thanks for your words. So far, Hitomi was administered iv, gravol,steroids,and morphine. She said she feels relief and I even managed to get a smile out of her despite her looking like she's comatose. I should have told you, last week, she was immediately put through light dosage of whole brain radiation, an MRI last night show's it had no or little effect on her, all they can do is increase the amount of radiation and wait.

Tori Tomalia said...

Have you considered any of the 2nd or 3rd generation ALK inhibitors which cross the BBB? There is also the LDK378 expanded access:

My thoughts are with you both during this scary time.