Two thumbs up for Emend
It occurred to me that I should check in and let our friends know how Johnny-boy is doing. Although he is definitely feeling the effect of his fourth round of chemo and has spent the whole day in bed, he has so far not had the debilitating nausea that he has experienced every previous round. The doctor gave him a drug called Emend this time that is specifically for delayed onset nausea and it's helping more than anything else we've tried. He is also wearing the Sancuso Patch in addition to the Emend, but the patch didn't eliminate the nausea before. So I'm pretty sure it's the Emend that has made the difference.
I knew the minute we both woke up this morning that he wasn't as severely sick as all the other times simply by looking at him, and the fact that he was talking to me. He tentatively told me he thought it was making a difference. And he said that the thought of food did not make him feel sick like before. Naturally, I assumed that if the thought of food did not nauseate him, then he was going to eat. And he still didn't feel like eating anything all day. But it was because food didn't sound good, not because the mere thought of it made him feel like throwing up. Big difference. He had a little mild nausea this afternoon, but it was minor.
He finally did eat a grilled cheese tonight for dinner. Which isn't much. But I've been told not to worry about a few missed calories the week of chemo.
We are both a little concerned about his lymph nodes. They are definitely still there even after four rounds of treatment. According to the ct scan, most of them have shrunk about 50% at the halfway mark. I know that Dr. Flinn expected more of a response than 50% at this point. But he did say that he has a patient whose nodes continued to shrink for an entire year following her last treatment. This is the thing with CLL; it's very individual. Everybody progresses and responds to treatment individually. And there is quite a range in lengths of remission. I've read about patients getting very long remissions of up to seven or eight years. And I've heard of patients coming out of remission in a year. A friend's husband whose CLL has behaved similarly to John's is one year out of treatment and his nodes are already growing again. It's hard not to think about those possibilities.
When I took John some ginger ale this afternoon, his neck looked like the nodes were starting to get larger again and it really worried me. I didn't say anything because I didn't want to cause any anxiety for John. A little later, he got up and came in the kitchen and they didn't look as swollen to me when he was standing. So I thought maybe I had just imagined that they were sticking out. But then a little later, he looked in the mirror and said they looked bigger to him. I told him we are both probably so focused on his nodes that we see the most minor change and feel anxiety. But the most important thing is they have responded and they may continue to respond favorably for months following the end of treatment. It isn't going to do either of us any good to project into possible outcomes. We just can't let ourselves go there. However, that is much easier said than done.
I don't want to give the impression that either of us is obsessing. We know we are in God's hands and we're trying to keep our thoughts positive. But we are human.
Our prayers for the right anti-nausea drug have been answered. Please pray with me that John's nodes will fully respond to this treatment. Dr. Flinn said that if John did not have a good response or he came out of remission quickly, we would need to discuss bone marrow/stem cell transplant. There are a lot of concerns that go along with transplant, even though there is the potential for very good results. We would obviously much prefer a long remission before having to think about that option.
Okay, enough about the possibilities of not so great results. I'm going to reject those fears and regain my positive attitude. I just wanted you to know how to pray for us. I can't tell you what it means to me to know you are praying.
I knew the minute we both woke up this morning that he wasn't as severely sick as all the other times simply by looking at him, and the fact that he was talking to me. He tentatively told me he thought it was making a difference. And he said that the thought of food did not make him feel sick like before. Naturally, I assumed that if the thought of food did not nauseate him, then he was going to eat. And he still didn't feel like eating anything all day. But it was because food didn't sound good, not because the mere thought of it made him feel like throwing up. Big difference. He had a little mild nausea this afternoon, but it was minor.
He finally did eat a grilled cheese tonight for dinner. Which isn't much. But I've been told not to worry about a few missed calories the week of chemo.
We are both a little concerned about his lymph nodes. They are definitely still there even after four rounds of treatment. According to the ct scan, most of them have shrunk about 50% at the halfway mark. I know that Dr. Flinn expected more of a response than 50% at this point. But he did say that he has a patient whose nodes continued to shrink for an entire year following her last treatment. This is the thing with CLL; it's very individual. Everybody progresses and responds to treatment individually. And there is quite a range in lengths of remission. I've read about patients getting very long remissions of up to seven or eight years. And I've heard of patients coming out of remission in a year. A friend's husband whose CLL has behaved similarly to John's is one year out of treatment and his nodes are already growing again. It's hard not to think about those possibilities.
When I took John some ginger ale this afternoon, his neck looked like the nodes were starting to get larger again and it really worried me. I didn't say anything because I didn't want to cause any anxiety for John. A little later, he got up and came in the kitchen and they didn't look as swollen to me when he was standing. So I thought maybe I had just imagined that they were sticking out. But then a little later, he looked in the mirror and said they looked bigger to him. I told him we are both probably so focused on his nodes that we see the most minor change and feel anxiety. But the most important thing is they have responded and they may continue to respond favorably for months following the end of treatment. It isn't going to do either of us any good to project into possible outcomes. We just can't let ourselves go there. However, that is much easier said than done.
I don't want to give the impression that either of us is obsessing. We know we are in God's hands and we're trying to keep our thoughts positive. But we are human.
Our prayers for the right anti-nausea drug have been answered. Please pray with me that John's nodes will fully respond to this treatment. Dr. Flinn said that if John did not have a good response or he came out of remission quickly, we would need to discuss bone marrow/stem cell transplant. There are a lot of concerns that go along with transplant, even though there is the potential for very good results. We would obviously much prefer a long remission before having to think about that option.
Okay, enough about the possibilities of not so great results. I'm going to reject those fears and regain my positive attitude. I just wanted you to know how to pray for us. I can't tell you what it means to me to know you are praying.
Comments
Blessings,
Deb
www.cllcfriends.com
We love and miss you both! And remember that Jesus is right next to you as you carry your crosses!
Michael + Norma