Monday, December 1, 2008

Everyone is voting for necrosis

Steve's PET scan was uneventful this morning. I took Cooper to school, Liz picked up Katie for the morning, and Steve and I headed south for the cancer center. He was injected with a radioactive tracer (just one stick!), waited a while and then rested in a scanning machine.

Dr. M expects to receive results late today or early Tuesday. She says she'll call us when she gets the reading. The scan will tell us if the enlarged mass is live tumor activity.

We spoke with Dr. M yesterday to let her know about Steve's worsening symptoms. She spent a while on the phone explaining what the doctors agree on so far.

Everyone believes that the growing Spot is the result of radiation and chemotherapy. The technical term is necrosis. Necrosis is when healthy tissue and cells die. So, all the consulting doctors think that the treatment Steve has received so far, which was absolutely necessary, is also what has caused healthy cells to die.

It's impossible to know from an MRI. (A biopsy is the best way to be sure, but there's no way that's going to happen again.) But all the doctors and UT-SW and M.D. Anderson feel certain based on the timing of his returned symptoms and the location of the dead healthy tissue.

The PET scan will confirm their theory.

It will be fabulous news if the tumor itself isn't growing. Still, there is the issue of the healthy tissue dying. The brain stem is small but controls all the nerve and sensory systems. A little change in the brain stem can cause big changes in the body. Steve can't afford many more little changes.

So, the next issue is how to stop necrosis.

Dr. C at M.D. Anderson recommends the use of Avastin. Avastin was first used to extend the life of colon cancer patients. It is now used for a number of cancers. (Use for brain tumors is considered "off label." Dr. M's office has already started working on pre-authorization from our insurance company. So far, our United HealthCare plan has been awesome. They have covered more than we expected.)

Avastin works by affecting blood vessels. The hope is that Avastin will stop capillary leaks at the site and therefore stop the deadness from spreading. (Another hope is that I'm explaining this correctly!)

Steve will begin taking Avastin tomorrow or Wednesday, we think.

He is scheduled to have the port placed in his chest Wednesday morning. If it's possible to begin using the port the same day as placement, they'll start using it then to administer Avastin.

If medical providers think it's not a good idea to start using the port right away, they are going to try to get him scheduled for an IV appointment Tuesday, and he'd start Avastin then. Avastin is given every two weeks. We need it to start working right away!

Steve will also continue taking Accutane. (As a reminder, the high dose of Accutane is used to trick the cancer stem cells into behaving like regular ol' cancer cells.)

He will not be on an official chemotherapy for now. The doctors agree that the Temodar has outlived its effectiveness.

If the tumor cells do start growing again, he'll most likely start a second chemotherapy (CPT-11).

1. We're waiting for the PET results to confirm that the enlarged mass is necrosis.
2. We're waiting to find out if Steve will begin Avastin on Tuesday or Wednesday.
3. We're praying that the Avastin will do its job quickly and relieve Steve of his worsening symptoms.


I've been keeping track of thank-yous on the upper right side of the page. Yesterday was an especially eventful day here.

Bill K. spent about two hours in the front yard, trimming bushes (Cooper assisted with raking). Jim and Betty came over so I could grocery shop. While they were here, they played with Katie, helped Cooper with a school project and picked up the kids' rooms. Jeannie D. came over at night so I could run eight miles with Allison (the half marathon is two weeks away). And an unnamed elf left two small Christmas trees on the front steps -- one for each child to put in their rooms.

We are so blessed. "Thank you" just doesn't seem sufficient some days.


rob powell said...

Thanks for the update. Very informative and encouraging.

Anonymous said...

I'm pouring on the prayers for you all!
Hope you have a good week,