Sep 02, 2011 - 3:27 pm
We flew back from NIH on 8/26 (my 33rd anniversary) and David had an excruciating headache on the flight. It was a nightmare, with the stewardesses all clustered around our seats, giving David oxygen, putting icepacks on his head, etc. We finally got that headache under control with a lot of oxycodone. It scared us for David to take more oxy because NIH had just warned us about the possibility of overdosing, but we were desperate.
David and I had hoped that the airplane headache was just a random one, brought on by the stress of the trip and by flying to and from MD in two days. But then yesterday his chronic low grade headache escalated into another terrible one. David said on a scale of one to ten, he'd rate it a nine and a half. I rushed him to ER and they did a CAT scan that showed, thankfully, no bleeding, but swelling in the brain. They gave him Dilaudid to control the pain and a "whopping dose" of dexamethasone for the swelling. It abated to a level two headache, which is not not real comforting, considering all the pain medicine he'd just taken.
I talked to the NIH doctor and there is a strong possibility that David will not be able to continue on this clinical trial. They don't know if Suntent (the experimental chemo) caused the swelling, or if the tumor is growing and causing the swelling. Either way, Sutent is apparently not helping. They told him to stop taking Sutent for now. Our next likely treatment will be Avastin, here in the Northwest, at OHSU. (Oregon Health Sciences University) We are not really happy about that. We had hoped to do another clinical thru NIH if the first one didn't work, but I get the feeling that NIH doesn't think it's in David's best interest to try more unproved chemos and treatments when his tumor may be growing. They seem to want to use Avastin, which I think they believe is likely to at least stop progression for a time. The dr. said Avastin is a good chemo with durable results....not a cure, but will help David right now.
I don't know exactly why I have mixed feelings about Avastin....I am afraid of the side effects. And I thought it was going to be our last option for treatment, though NIH says there are other options besides Avastin. He calls Avastin "Plan B." Do any of you have any comments or opinions about your experiences with Avastin? I'd like to know a little about what to expect.
David is very disappointed (gross understatement) at the thought of being removed from the clinical. We had the CD with the CAT sent to NIH, and they are supposed to call us today and tell us if David will stay on the clinical or not. I'm very scared by the turn in events but I'm trying to be brave and positive for David's sake. He doesn't say much.
Anyway, that's where we are today. I will add a comment to this thread when we know what direction we will be going.
Love and blessings to you,