John Update (CAL-101 Clinical Trial)

Today was John's regular check-up with Dr. Flinn. His blood counts are all stable and within the normal range brackets.

Here are the numbers:

 John                        Reference Range
WBC  5.9                       4.6 - 10.9
ALC   3.1                        0.6 - 4.7
Neut   2.5                        2.0 - 7.8
RBC  4.37                     4.04 - 6.13
HGB  14.0                     12.2 - 18.1
HCT  43.7                     37.7 - 53.7
PLT   185                       142 - 424

He did not have to have CT scans this time. After completing the first twelve cycles, he is now able to cut back to scans every four cycles instead of every two. But there are no visible nodes.

During John's examination today, Dr. Flinn remarked about how amazing it is that this lowest dose of CAL-101 is doing for John what FCR (chemotherapy) failed to do. He has been stable for over a year with no side effects or complications. His CLL is not progressing and he is having no issues other than fatigue. Unfortunately, Dr. Flinn said there is really nothing he can do for the fatigue. It's part of having CLL.

The fatigue is not so severe that John cannot maintain his normal routine. He is up every morning before 5:00 a.m. and leaves for work by 6:00. He says he feels best in the morning, but starts to feel himself "running out of steam" by mid-afternoon. At night when he sits down to watch a little TV, he often struggles to stay awake because he is so exhausted. However, he is running on the treadmill at least three nights a week.

He does not have debilitating fatigue. He just realizes that he has to come home earlier these days and make time for R&R. He has not always been so good about that. (I am not just saying this because he's my husband. I have never in my life met anyone with John's work ethic and dedication. He is called a workaholic by many. But I don't think of him that way. He is not always at work because he loves it so much or because he would rather be there than home. He is just incredibly consciencious and hard-working. He takes his responsibility to the business and to his partner very seriously.)

John has also told me that he has occasional days when a "bad feeling" just kind of sweeps over him and he will suddenly feel kind of sick. Sometimes it goes away as quickly as it comes. Other times he feels bad all day. He says, "I guess that is just part of it. I will probably never feel as good as I used to. But I'm thankful I'm doing as well as I am." He has always had a very positive attitude. He took his CLL diagnosis in stride much better than I did initially.

It was about this time in 2007 when John was officially diagnosed. I started reading and soaking up CLL knowledge like a sponge. I quickly learned how important it is to consult with a specialist. I found Dr. Flinn through an online support group just after we had made an appt. to visit the Mayo Clinic in Rochester. I made an appt. to see Dr. Flinn in August but we went ahead with our Mayo consult in July. We mentioned Dr. Flinn to Dr. Zent and he gave Dr. Flinn the highest recommendation. I remember feeling so proud of my research efforts because I had been lecturing John about the importance of being in the care of a CLL specialist and stressing that we should not choose our physician based on convenience. We needed to drive to Nashville to see Dr. Flinn because he's one of the best in his field. There are great doctors here in town, including hematologists. But when you have a CLL specialist only a forty minute drive from your house, it doesn't make sense to go to anyone else. Dr. Zent said some of the very same things to John that I had been saying. Everything Dr. Zent told us at our Mayo evaluation confirmed things I had learned and tried to explain to John. I felt like a world-class caregiver that day. I remember thinking, "Now John will realize that I really do know what I'm talking about." : )

When we met Dr. Flinn in August 2007, we both knew we had found the right doctor. We told him we were not there for another opinion. We wanted John to be in his care. And John has been ever since. Of course, at that time, we had no idea that John's mom would soon be diagnosed with CLL as well (in January of 2008). But when she was, I urged her to establish a relationship with Dr. Flinn also. It only made sense that I would be her primary caregiver and take her for appointments and ultimately treatment when the time came.

Marian's regular appointment is next Thursday. Her WBC has started increasing again -- even on 100 mg. of CAL-101 twice a day. But she feels good and has fully recovered from her bout with pneumonia this past January. She was responding very well to CAL-101 prior to her pneumonia. But she hasn't been getting the same results since Dr. Flinn reduced her dosage. (Reducing her dosage was due to the pneumonia being a possible side effect of treatment. Both CLL and many treatment options compromise the immune system.) I'm not sure at this point whether Dr. Flinn will adjust her dosage or suggest trying something else. But I will post an update when I know more.

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