AO III Recurrence/NIH/David

I started a new thread because I don't know where I posted what information. A recap on our situation: In July, after a little over 2 years on Temodar with clear MRI's, David had 2 seizures. MRI done in ER showed "disease progression." That means tumor growth. Our NO at OHSU wanted David to be a par t of his Blood Brain Barrier Disrupter clinical trial but the insurance co. denied it the day before we were scheduled to start. There apparently are no funds left for that clinical trial due to all the cutbacks. That really was a devastating blow to all of us, but especially to David. He said he felt like it was his death certificate. He's never talked like that before. Anyway, we appealed and our doctor personally called the medical director of the ins. company, we contacted a lobbyist, the governor's advocacy people, the news stations, OHSU's advocates....but it's still "NO". In the meantime, my family members did internet searches and contacted everyone they could think of, and one of them found the "National Institute of Health" in Betheseda, MD. We are in Salem, OR. David and I are flying out there tomorrow at 6 am. We have an appt on Wed. to see if he qualifies for one of their several clinical trials. We paid for this trip but if he participates in one of their clinicals, they will pay airfare and lodging for David and a support person (me) for monthly treatments at their facility. All the treatments will be totally covered by them at no cost to us. I don't know how I feel about David being a part of a purely experimental clinical, but we definitely want to check it out. We may decide to stay with OHSU and just do conventional chemo and wait until (if) David has another recurrence and then go to NIH. Or if conventional chemo doesn't work--we could go back to NIH. Of course the decision is totally David's and we will support whatever he decides to do.

In between this appt and the insurance denials etc., we went on an Alaskan cruise that we had planned a year ago. It was with my brother and sister in law, and my sister and brother in law, and some of their kids, and my husband Larry. It was for my sister and brother's two 50th wedding anniversaries. When David had this recurrence, I didn't want to go anymore. But my family all pitched in and paid for David to go too, so we packed up and spent a week in Alaska. Our NO strongly encouraged David to go ahead and go...said that a week or two's postponement of chemo would be okay. We had a really good time. It was like the life on the ship was the reality and that became my life. I was able to force myself not to freak out about David's situation. He did really well too, though we had some heart wrenching talks late at night. And it was hard to come home and face the real situation. I am very grateful for that time we all had together on the ship and in Alaska. But I am very, very anxious about the length of time that David has been off of chemo. The last time he took Temodar was the end of May. I don't think that that tumor has just been sitting there doing nothing all this time. Thank God, so far David hasn't had any symptoms aside from the seizures. We did whatever we wanted in Alaska...ziplined, whale watched, swam, hot tubbed, went to shows, hiked to glaciers....just like nothing was wrong. David is having trouble with Keppra, though. It gives him a bad headache, a stomach ache, and it makes him very, very irritable. Almost like a personality change. I can't believe the difference in him when he skips a dose. But I strongly encourage him to take it faithfully because a seizure would be worse than the side effects....

Anyway, I'm sorry that I went on so long. I will post again when I find out what NIH has to say. So far, I have been really pleased with the way NIH has helped us and with how encouraging they have been about us coming out to see them. No promises...but we are so grateful that we have another option (or more) available to us.

Love and blessings,
Cindy