Dec 30, 2011 - 3:37 am
I heard back from David's team today. The plan is for David to have a month off from all treatments, starting today, so he can recover from the BBBD treatment that was so hard on him. Then at the end of January, he will do the same chemo combination: carboplatin, etoposide, and melphalan--but without the mannitol--no blood brain barrier disrupter. That treatment--the BBD--almost killed him.
He will receive the chemo via an intra-arterial infusion....they will run a line up his femoral artery up to his carotid like an angioplasty, and then shoot the chemo to his brain. Two chemos will be given that way, and the third will be administered via his port. They will do it one time, vs. the two infusions done with the BBBD. They call this treatment "IA" for intra-arterial. David had this type of chemo treatment in Sept and he tolerated it well. It also stabilized the tumor and possibly reduced it a small amount.
They will also start David on Avastin. I talked some more about Avastin with one of the members of our NO's team. She said that Avastin is used for different reasons. Sometimes it is used just to treat symptoms and improve the quality of life. I think I've heard that before, and that's where I got the feeling that it was a "last resort" treatment. In our case, our NO wants to use it in conjunction with David's chemo because our NO believes in treating brain tumors aggressively and hitting it with as many weapons as possible. We want that same thing. Our NO wants to use chemo to shrink or at least stabilize the tumor, and to give Avastin to starve the tumor as much as possible.
According to our NO and his team, Avastin is not a chemo. It inhibits the development and formation of blood vessels to the tumor, but it does not kill or shrink cancer cells. She said the "theory" is that Avastin will starve the tumor by cutting off its food supply by reducing the blood vessels. She emphasized the word "theory." I think that's because there is no guarantee that this new treatment protocol will work for David.
When David did the BBBD, one of the doctors on the team came and talked to me about an issue that developed with David. They had a very difficult time controlling the bleeding at the insertion point in his arteries in his groin. Usually they can get the bleeding to stop and a clot to form in a matter of minutes, but with David, it took over 20 minutes and they had a difficult time. Since one of the side effects of Avastin is bleeding issues, I was concerned about the clotting problem. I asked about it, and the nurse told me that they ran extra clotting tests on David's bloodwork and it all came back normal. So they think he will do okay with Avastin. I am not so sure. I have lost some faith in the doctors and what they expect. I am really shocked and dismayed about the reaction that David had with the BBBD. We (the doctors, the entire team, me and our family) all expected David to be able to tolerate the BBBD without any problem because he is young and except for a brain tumor, he's in excellent health. But he sure didn't tolerate the BBBD very well at all. So when they say he should tolerate Avastin...well, I am scared.
David continues to improve every day. He is almost back to normal. He is just very, very tired, and he feels lousy. His bones all ache from the medicine they gave him to promote bone marrow production. I mentioned his fatigue and how his eyes look so tired and bleary, and the nurse said that's totally to be expected after a normal BBBD, and David had a really rough BBBD. So they are encouraged that David is doing so well.
Mentally, I don't know--or maybe I should say emotionally.....David went out with a group of guys for a birthday dinner tonight. He was wearing a new wool jacket with a nice hat and a wool scarf wrapped around his neck. He's really tall...6'3"....and he looked so good. His sister Christy and I were so happy to see him getting out with his friends. But he called me after only an hour and asked me to come and get him. When Christy and I got to the restaurant to pick him up, he was standing outside in the rain. I asked him if he was ok, and he said yes. When we got home, I asked him again, and he said that he was okay. I looked at him, and he looked at me, and I said, "You say you are okay, but my heart tells me something different." He said, "What does your heart tell you?" I said....."It tells me that you are hurting." He said that to be honest, he felt a little jealous tonight. All of his friends are so carefree and are enjoying their lives without worrying about tomorrow. He's never said anything like that before. How do you respond to something like this? I said that I feel jealous of them too. I hate the way I feel, but I feel that way sometimes. He kept looking at me with a funny look in his eyes. Like he wanted me to say something that would help him, that would give him some hope or some comfort. He had a pleading look in his eyes. I couldn't think of anything to say. I hugged him a long time without talking and we just stood there in our wet jackets, making puddles on my kitchen floor. Sometimes there's just nothing you can say.
I am taking it one day at a time, and focusing on the fact that David is recovering so well. It's amazing to think that just a little over a week ago, he was unable to walk, talk, or feed himself. Couldn't even say his name. And now he's almost back to where he was before the treatment. It's taken a lot of effort and he still has a ways to go, but the improvement is really awesome. He starts physical and occupational therapy next week. I'm not sure that he needs it, but I figure it can only help him. It will give him some purpose and direction too.
Please remember David in your prayers.
Love and blessings,