Another NIH/clinical trial/David update

So here's where we are currently at in David's battle with brain cancer.....

We flew out to the National Institues of Health in Betheseda, Maryland last week for three days and then flew home. We are here now too.

We flew out on Wed. 8/2, met with their doctors on 8/3, flew home on 8/4. They were long flights and a long three days. The drs examined David and then said that he qualified for three of their current clinical trials. Here were the options they gave us:

1) stay at OHSU and do the standard IV chemo mix with carboplatin etc. (no treatment at NIH but we could possibly come back later and do another clinical trial, depending on David's future status)
2) NIH clinical trial with avastin and an experimental chemo added. IV treatments. Would require a trip to NIH every two weeks.
3) NIH clinical trial with carboplatin and another experimental chemo. Also IV treatments. Trips to NIH every four weeks.
4) NIH clinical trial with Sunitinib (experimental oral chemo) Trips to NIH every four weeks

The doctors all stressed that the choice was totally David's and that all four choices were equally good choices and they would not recommend one choice over another one. They said that if they knew which choice would bring the best results, then they would not be doing clinicals. They would just do the one treatment that they knew would give the best result. Made sense....

We flew back home and talked and talked and read up on everything that we could think of and went over all the clinical trial info over and over and made up lists of pros and cons and researched as best we could and prayed really hard...and David decided to go with the Sunitinib trial for a variety of reasons. So we flew back to NIH yesterday (8/10) and today and tomorrow David did and will do a bunch of tests...bloodwork, PET scan, MRI, EKG, echocardiogram, etc., and he will start on the Sunitinib tomorrow. Then we will fly home on Saturday 8/13 and then fly back here in two weeks so they can check up on him, then fly back again in another two weeks, and then we will come every 4 weeks.

Except for headaches which we are pretty sure are from Keppra, which also gives him occasional stomach aches, David is physically doing good. We are feeling a lot of fear and stress and dread of the unknowns but we are dealing with it. David and I are enjoying our time together....even joking around a little, and just talking about inconsequential things, taking pics, eating at nice restaurants....we sat in the hot tub last night and talked to a tech guy who is here in MD installing a super hi tech machine at NIH. It's used for reading blood cells or something and is going to be helpful in AIDS research. He was amazed when we finally told him why we were here. David really is doing good. The drs here did the whole test routine...I'm sure you know the drill..."do the drunk walk, touch your nose, remember these three things..." etc., and they said that if David didn't tell them that he had a problem, they would never know he had a problem. So that's something to be very, very grateful for.

I had posted previously on here, asking if anyone knew anything about NIH and Dr. Fine, etc. I had serious doubts about this place. Well, I am happy to be able to say they are "totally legit"...using my kids' terminology. Everything appears top-notch, and I am amazed that a place this size, with the amount of people they are seeing and treating, can operate as smoothly and as efficiently as this place does. I have to admit....I did not expect a place run by the government to be so incredibly on top of their game. We had a thirty minute echocardiogram scheduled at 11, then an EKG and bloodwork, and a meeting with a social worker, and we were done and on our way back to our hotel by 12:30. We didn't wait for more than 3 minutes for any of the tests. The waiting rooms were all lovely with courtesy coffee, tea, and fruit juices, TVs, couches and chairs, and huge, peaceful, soothing fish aquariums. The staff is all extremely helpful and courteous and very understanding of our needs. Very professional without sacrificing the personal touch. Compassionate and encouraging. They don't point and tell you where you need to go...they personally come out from behind their desks and walk you to your destination. I had a message on my phone this am from our nurse/care coordinator/travel facilitator. It's her day off but she just wanted to make sure we were doing okay and had everything we needed. On her day off! (She knew how stressed I was about the flights and hotel and shuttle, etc.)

NIH also arranged and paid for our flight here and back. They emailed our flight confirmation numbers and I printed it off...that was all I had to do regarding our flights. It's not easy to fly from Oregon to the East Coast...we had to change planes in AZ and NYC the first time, and Chicago the second time. I was too stressed to arrange our flights the first time...my husband did it all, including booking a hotel and renting a car for me and David. (We paid for only the first trip last week--just put it all on a credit card.) For this trip, they gave us $50/night towards our hotel and $15 each, per day, for food. They have a shuttle service that is easy to use, that runs to and from the airport to NIH and from NIH to and from the hotel. (nothing from the hotel to the airport) It runs every half hour and is very easy to use and takes us right to the door of NIH and our hotel. And it's free. Since we are doing a clinical trial, all of David's treatments and tests here will be 100% covered. The Marriott here gives NIH people a break...$109 + tax/day for our hotel room. It's a really nice room, and they even give NIH patients and their support person (me) free internet...that's a big deal to us. We do a lot online...I'm always trying to research, and we like to be able to keep in touch with all the family and friends at home. They really appreciate the updates.

NIH itself--the building---is huge, beautiful and high tech and ultra modern. Very, very impressive. Just the way it looks inspires confidence. Now all we need is for the Sunitinib to work....and that's a total unknown. It's a total experiment with no real data yet. Scary...but everything about brain cancer is scary.

We decided to do a clinical trial now and not wait until we are desperate (though I've felt pretty desperate since the day David was diagnosed). We didn't want to wait until David is in poor health and may not qualify for a clinical. And if this clinical doesn't work, he can try another one, or stay at OHSU and do standard chemo. And possibly come here again down the road. We did not sever our ties with OHSU either. We will keep them apprised regarding David's status and his treatments here. All the records created by NIH are being forwarded to OHSU. I am grateful to OHSU for how much they have done for David. I am also very, very grateful that we have the option to work with NIH. I thought they sounded far, far too good to be true...but so far, they have far exceeded my expectations.

I will keep doing updates on David's treatments etc. I'm sorry this is so long...writing this out helps me process stuff. It's a form of therapy for me, I guess. Thank you for reading this...if you made it this far--haha!

Love and blessings,
Cindy
PS feeling some hope here again....July was a hellish month....