Do Kinase Inhibitors like CAL-101 work well on large lymph nodes?
I'm posting pictures again (before and after CAL-101) because this question was asked today in a CLL email list that I read.
My husband hated having his picture taken when his lymph nodes were very large from CLL. I remember telling him that his lymph nodes didn't look as bad as he thought they did and that he was just as handsome as ever (in my opinion). He would always give me a "yeah, right" look. But I was very sincere in saying that to him. Because his nodes increased gradually, I got used to his neck being larger and I did not think it detracted from his gorgeous face. John has the most beautiful blue eyes (which you seldom see in pictures because the flash turns them red, and when you take the red eye out, they turn black). And he has such a warm smile. (And I adore him.) So his swollen neck did not diminish my attraction to him in the least. But he hated his neck. And not only was the swelling visually unattractive in HIS opinion, the nodes were very uncomfortable and even painful at times. The nodes you see in these pictures (in his neck) were swollen just as large in other areas of his body; under his arms, in his abdomen, and in the groin area. We used to go for walks in our neighborhood, but we had to stop because he said the groin nodes hurt too much to enjoy it. That was right before he started chemo in 2009.
This picture was taken in 2008.
This picture was taken in 2009.
Here's what John's neck looks like now (pictures taken last night).
John has been taking 50 mg. CAL-101 twice a day since May 2010.
When I look back now at the "before" pictures, I understand why John gave me the "yeah, right" look when I told him how good he looked. But the truth is (and feel free to gag), he is the most handsome man in the whole world to me - with or without enlarged lymph nodes - not only because I think he's good looking, but because the person inside is good to the bone. He's made me feel like Cinderella from the first week we met. And when I look at him, I see Prince Charming. Still. But now that his neck is normal again, it's pretty obvious, even to me, just how huge his neck actually was.
Bone Marrow Effectiveness:
Another question often asked is how effective Kinase Inhibitors are on the bone marrow. John has not had to have another BMB. His marrow was 30% infiltrated before FCR and 20% infiltrated post FCR. But his mom, who is also on CAL-101, had a Bone Marrow Biopsy after six cycles. Her marrow was 80-90% infiltrated/impacted with CLL cells before treatment. Six cycles later, it showed 30% CLL. I would venture to say that John's has improved as well. But I'm glad he has not been required to have another biopsy.
Just to remind those who have not been following John's progress, FCR did very little for him. The nodes improved about 50% while going through treatment. But within a couple of months of the last infusion, they were growing again. Had there been no CAL-101, our only hope was stem cell transplant. Obviously, taking a pill morning and night is a whole lot more appealing than transplant. And both John and his mom have good quality of life. Marian says she feels great. She just gets tired more than she used to. But she is 79 and still goes dancing. John still has fatigue, but not debilitating fatigue. He does everything he is used to doing, including running on the treadmill three nights a week. But he falls asleep watching TV a lot more than he used to.
We have so much to be thankful for.