We were preparing to go to Erin’s 9:15 am appt with Dr. Adams this morning, when I got a phone call from Steve. He had talked to Dr. Jennifer Clarke at UCSF yesterday and he tried to call Erin yesterday, but she was sleeping so heavily, she did not answer the phone.
Dr. Clarke said that the tumor seems to have grown about 1/2 cm, so the infusion of Irinotecan and Avastin is not working. Dr. Clarke and Dr. Adams conferred and agreed on a plan of action. There is a trial that is open that involves stopping the Avastin and Irinotecan immediately. It is a phase 1 trial which means the drug hasn’t been tested for brain tumors at all, though it has proved successful for other cancers. It is a pill called CC115.
When we saw Dr. Adams, he had cancelled today’s infusions. Erin has to be off of Avastin for at least another 2 weeks before she can begin the new trial. (Avastin cuts down the blood supply to vessels.)
I asked Dr. Adams why the steroids cut down on swelling in the brain due to the tumor, yet Erin’s face is swollen. He said that the face is not swollen: the steroids actually lay down layers of fat! And, of course they make her ravenous and she has eaten more lately. If she didn’t take the steroids, she could have a stroke, etc.
Dr. Adams said again that the results of the MRI are not so important as the fact that Erin’s clinical presentation is worse than when he saw her 4 weeks ago. Clark thinks that in the last 48 hours, she has become more wobbly and tired. He carried her tote bag, and I registered her this morning. But, this afternoon, she took care of everything when we picked up her glasses.
After the appt, I headed to bridge and Clark and Erin to Mel’s for omelets.
Erin and I just picked up her new glasses which have a stronger prism. They seem fuzzy now, but hopefully, they help her see the computer better.
I am eating microwaved tilapia and spinach before heading out to bridge again (this time with brother Bob). Clark, Erin, Colleen, Wheeler, and his friend are having pizza delivered and some are watching the final game of the World Series.
Barbara
Oct 28, 2011 @ 19:12:45
Barb,
Thanks for another update. I thought you would be watching the World Series. Vern is glued to the screen.
All the medications for Erin seem like a real balancing act. I can imagine that trying a new approach has appeal. That’s something that the one medication lays down fat on the face.
The waiting must be difficult, but it’s good you can get out to bridge and other activities to distract you from the waiting and wondering.
Love,
Barbs
Oct 28, 2011 @ 21:57:15
Love you Erin! We always have you in or thoughts and prayers.
Muchos besos…
Julieta
Oct 29, 2011 @ 22:40:58
Barbara, thank you for posting. I don’t often comment, but I do follow the blog regularly and really appreciate all the info. Please encourage Erin to call me if there is anything I can do to help. Laurie (Erin’s HS friend)
Oct 30, 2011 @ 20:55:39
Ditto Laurie’s thank you comment (except for the HS part — Erin and I were neighbors in East Sac in the 90s and have lots of mutual friends). –cb