Erin and I met with Dr. Adams today as she does every 2 weeks now before the Irinotecan-Avastin infusion (which will be tomorrow). Adams pointed out that the MR (as he calls it) showed decreased mass effect and less enhancement, but that the Diffusion Restriction was worse. I have been trying unsuccessfully to get a definition of Diffusion Restriction.
He says that her prognosis is bad and that she should ask UCSF about further trials for when the Irinotecan stops working – and he said that it will stop working – could be a week, a month, or a year. This really upset Erin and she has been upset all day.
He thinks that her clinical presentation is worse than it was a month ago (speech and loss of the visual field) and he goes more by that than by MRIs.
L, a friend of Erin’s from high school came by and took Erin to Raley’s to grocery shop about 4pm. They met up recently in Davis because L has children in the same school as Erin’s. Coincidentally, L’s mother died from a glioblastoma when they were juniors in high school.
Barbara
Sep 30, 2011 @ 00:42:23
RE: Diffusion Restriction, The short answer….The diffusion restriction is basically a measurement of the movement of water molecules in that area. If they are resticted in their movement it could be due to masses, fats , nerve sheaths, encapsulation etc.
Sometimes the presence of restriction can be a precursor to new tumor growth which is probably why the oncologist is being very cautious with this. I’m sorry he sounded so negative. Hopefully the chemo will continue to knock down the tumor cells that are there. I know the steroids have nasty effects, but they should help with the edema.
Holding Erin dear in my thoughts.
Sep 30, 2011 @ 00:55:39
Tony, thanks for the prompt and great explanation of Diffusion Restriction.
I forgot to mention that Dr.Adams recommended staying on the low dose of steroid that Erin currently is on.
Barbara
Sep 30, 2011 @ 06:27:02
Erin, you are in our thoughts in prayers. You are missing all of the fun on Rutgers Drive this morning. At 6:00am there is an arrest going on across the street!!
Hang in there.
regina
Sep 30, 2011 @ 11:17:14
We’re sending healing thoughts & prayers Erin’s way…with hugs to her & all of you! You’re such a wonderful support team. Bill & Nancy
Sep 30, 2011 @ 14:23:19
Echoing the beautiful thought above, Holding Erin dear in my thoughts. I am, too.
Sep 30, 2011 @ 17:14:19
I’m a brain tumor patient, too, and I find my neuro oncologist has a somewhat negative outlook on things. I assume that it’s because he sees so many bad outcomes. Looking at it like that, I can understand. But we have to have hope and faith on our side to face what’s ahead. That’s what it takes to get out of bed every day. I want you to know that keeping up with your journey gives me strength and hope. We don’t know what is ahead for us, but we must dig down deep to fight as hard as we can. Erin, I’m so glad that your Mom is there to walk with you into the fight.
Scott