CAL-101: Day 22
For all our friends and family who are following John's progress on CAL-101, I try to post an update after our weekly visit.
Pretty much all of John's lymph nodes have decreased dramatically. His neck looks completely normal to me. He says there are still a few he can feel. But they are not visible. YEA GOD!
His bloodwork continues to be pretty stable. His white count is steadily going up, but we were told to expect that. After a while, it will level out. But this is partly due to the lymphocytes being "dumped" out of the nodes. They have to go somewhere. And the first place they go is the blood. My understanding is that this drug kills the malignant lymphocytes eventually. (Correct me if I'm wrong, Randy.)
John's white count went up to 9.1 today (up from 7.5 last week; it was 4.2 on Day One of this treatment). It is now high normal. If it goes above 10.9 next week, it will be considered high. But not high for CLL. There are CLL patients with white counts in the hundreds of thousands and some of them have still managed to avoid treatment.
Neutrophils are still 2.0.
RBC 4.31
HGB 13.6
HCT 40.9
PLT 153
Things are looking good. I'm not entertaining any thoughts other than this drug working for a long time. I feel so hopeful and positive. And I refuse to allow myself to go anywhere else in my thoughts. Diagnosis or no diagnosis, time is so precious. I am just appreciating and cherishing every day.
A friend called me last week to ask how things were going. She said, "You must be happy with the results. You sound so upbeat and happy." I had some down days after John failed the chemo. I admit, I was scared. But I'm so encouraged to see the response in his nodes and I believe he is going to be feeling lots better soon. I just feel really optimistic, hopeful and very, very happy. I want to make the most of these good days. And I don't want to give up any moments to worry or projecting myself into uncertainty. That has been one of the biggest challenges for me since John's diagnosis. And I'm just believing God took us the route He had to take us to get this drug. I praise Him for the marvelous results and believe He absolutely uses doctors and medical research to heal our bodies. I trust Him for all our tomorrows!
Yes, I feel very upbeat! Hope is a wonderful thing!
After John's appt. today, he went with me to a doctor for a change. I've been having problems with my feet for about a year. I finally looked my symptoms up on the Internet and it sounded like a neuroma. My right foot only bothers me occasionally. But my left foot is constant. I know part of it is aging. The balls of my feet are sore more than they are not. Sometimes they are sore when I wake up in the morning. I can't wear shoes that put pressure on the balls of my feet if I'm going to have to stand much at all. I wind up in a lot of pain. And in my left foot, I get a shooting, tingling pain and numbness in my third and fourth toes.
I saw a foot and ankle specialist at TOA, Dr. James Yu. I really liked him. He said that sometimes bursitis or nerve inflammation can cause the same symptoms as a neuroma. He gave me a cortisone injection in my left foot and said that if that cured the problem, it was probably not a neuroma. If it is a neuroma, surgery is usually the only way to truly get rid of one. But he said the surgery is really minor, no big deal and takes about seven minutes to do. He said the recovery is like recovering from a cut in your foot that required about four stitches. I think I could handle that if I had to.
I don't like needles and wasn't looking forward to the injection. But I had two cortisone injections in my shoulder years ago and I tolerated them fine. I remember thinking they were not as bad as I had expected them to be. Dr. Yu said that if I did well with the shoulder injection, he thought the one in my foot would probably be no big deal. He laughed and said, "You know, I wouldn't get the injection for fun or anything, but most people seem to tolerate it well." Because I don't remember the ones in my shoulder vividly, I can't say if the foot was less painful. There were several seconds when it was pretty intense. But it was over really fast. I couldn't be a big baby with my tough husband sitting there watching. He takes bone marrow biopsies in stride. And I KNOW I couldn't do those without anesthesia!
By the time we left Nashville, it was too late for John to go back to the dealership. So we drove around and went through some model homes. And then we ate dinner at Newk's.
All afternoon I just kept thinking how great it is to be so happily married, so crazy about my husband, and - CLL or no CLL - to have such a BLESSED life together! I would rather ride around in a car with John than go around the world with anyone else.
As I type these words, John is in the background making comments about the Lakers/Celtics Game Seven. I have to admit that, while he is my favorite person to be with, he is not the most fun guy to watch a Lakers game with if you are rooting for the Lakers. LOL. A minute ago he said, "He's so lucky." I looked up and he was talking about Kobe Bryant. I don't even like Kobe (as a person). But that made me laugh.
He says he doesn't care who wins, he just wants to see a good game. But if I wrote a transcript of his comments, it would be clear who he doesn't want to win. I used to be a huge Laker fan, going to games in LA (in the late eighties/early nineties) and watching them on TV all the time. I have not followed them much at all the last few years. But they will always be my team and watching them with John has only brought out my Laker spirit! We have never fought in our entire relationship. But (dare I admit?) we have bantered a little bit during this series.
Life is good.
Pretty much all of John's lymph nodes have decreased dramatically. His neck looks completely normal to me. He says there are still a few he can feel. But they are not visible. YEA GOD!
His bloodwork continues to be pretty stable. His white count is steadily going up, but we were told to expect that. After a while, it will level out. But this is partly due to the lymphocytes being "dumped" out of the nodes. They have to go somewhere. And the first place they go is the blood. My understanding is that this drug kills the malignant lymphocytes eventually. (Correct me if I'm wrong, Randy.)
John's white count went up to 9.1 today (up from 7.5 last week; it was 4.2 on Day One of this treatment). It is now high normal. If it goes above 10.9 next week, it will be considered high. But not high for CLL. There are CLL patients with white counts in the hundreds of thousands and some of them have still managed to avoid treatment.
Neutrophils are still 2.0.
RBC 4.31
HGB 13.6
HCT 40.9
PLT 153
Things are looking good. I'm not entertaining any thoughts other than this drug working for a long time. I feel so hopeful and positive. And I refuse to allow myself to go anywhere else in my thoughts. Diagnosis or no diagnosis, time is so precious. I am just appreciating and cherishing every day.
A friend called me last week to ask how things were going. She said, "You must be happy with the results. You sound so upbeat and happy." I had some down days after John failed the chemo. I admit, I was scared. But I'm so encouraged to see the response in his nodes and I believe he is going to be feeling lots better soon. I just feel really optimistic, hopeful and very, very happy. I want to make the most of these good days. And I don't want to give up any moments to worry or projecting myself into uncertainty. That has been one of the biggest challenges for me since John's diagnosis. And I'm just believing God took us the route He had to take us to get this drug. I praise Him for the marvelous results and believe He absolutely uses doctors and medical research to heal our bodies. I trust Him for all our tomorrows!
Yes, I feel very upbeat! Hope is a wonderful thing!
After John's appt. today, he went with me to a doctor for a change. I've been having problems with my feet for about a year. I finally looked my symptoms up on the Internet and it sounded like a neuroma. My right foot only bothers me occasionally. But my left foot is constant. I know part of it is aging. The balls of my feet are sore more than they are not. Sometimes they are sore when I wake up in the morning. I can't wear shoes that put pressure on the balls of my feet if I'm going to have to stand much at all. I wind up in a lot of pain. And in my left foot, I get a shooting, tingling pain and numbness in my third and fourth toes.
I saw a foot and ankle specialist at TOA, Dr. James Yu. I really liked him. He said that sometimes bursitis or nerve inflammation can cause the same symptoms as a neuroma. He gave me a cortisone injection in my left foot and said that if that cured the problem, it was probably not a neuroma. If it is a neuroma, surgery is usually the only way to truly get rid of one. But he said the surgery is really minor, no big deal and takes about seven minutes to do. He said the recovery is like recovering from a cut in your foot that required about four stitches. I think I could handle that if I had to.
I don't like needles and wasn't looking forward to the injection. But I had two cortisone injections in my shoulder years ago and I tolerated them fine. I remember thinking they were not as bad as I had expected them to be. Dr. Yu said that if I did well with the shoulder injection, he thought the one in my foot would probably be no big deal. He laughed and said, "You know, I wouldn't get the injection for fun or anything, but most people seem to tolerate it well." Because I don't remember the ones in my shoulder vividly, I can't say if the foot was less painful. There were several seconds when it was pretty intense. But it was over really fast. I couldn't be a big baby with my tough husband sitting there watching. He takes bone marrow biopsies in stride. And I KNOW I couldn't do those without anesthesia!
By the time we left Nashville, it was too late for John to go back to the dealership. So we drove around and went through some model homes. And then we ate dinner at Newk's.
All afternoon I just kept thinking how great it is to be so happily married, so crazy about my husband, and - CLL or no CLL - to have such a BLESSED life together! I would rather ride around in a car with John than go around the world with anyone else.
As I type these words, John is in the background making comments about the Lakers/Celtics Game Seven. I have to admit that, while he is my favorite person to be with, he is not the most fun guy to watch a Lakers game with if you are rooting for the Lakers. LOL. A minute ago he said, "He's so lucky." I looked up and he was talking about Kobe Bryant. I don't even like Kobe (as a person). But that made me laugh.
He says he doesn't care who wins, he just wants to see a good game. But if I wrote a transcript of his comments, it would be clear who he doesn't want to win. I used to be a huge Laker fan, going to games in LA (in the late eighties/early nineties) and watching them on TV all the time. I have not followed them much at all the last few years. But they will always be my team and watching them with John has only brought out my Laker spirit! We have never fought in our entire relationship. But (dare I admit?) we have bantered a little bit during this series.
Life is good.
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