12 Cycles of CAL-101 and John's CLL is Still Under Control

John had his regular two month office visit and lab work today. He has completed twelve 28-day cycles of CAL-101 (50 mg. twice a day) and he's doing great. At this point, he begins the rollover phase of the drug study. As long as the drug is working, he will continue taking it.

John's lymph nodes were dramatically reduced early on in this treatment. This week's scans show that they are all stable. And his blood counts are all within normal range too (except for MCV and MCH, which are always a little high -- but nobody seems concerned with those numbers).

Today's bloodwork showed these numbers:
WBC: 5.9
ALC: 3.1
Neut: 2.5
RBC: 4.34
HGB: 14.0
HCT: 42.4
PLT:  187

So far, John has had no side effects from treatment with CAL-101. And he is getting these great results from the lowest dose given. Dr. Flinn only has one other CLL patient who is responding to the 50 mg. dose. I think 100-150 mg. are the dosages that work best for most patients. However, there are patients taking higher doses as well. All patients' liver enzymes are monitored closely for toxicity. If toxicity develops, the patient's dosage is either reduced or they discontinue the drug.

CAL-101 has been a miracle drug for John's CLL. If you've followed my blog long, you know that he failed FCR completely. His lymph nodes (which have always been where his CLL proliferates) were somewhat reduced by chemo, but he did not get even a short-term complete response. The lymph nodes started coming back within weeks of his last dose of chemo. We knew within two months that FCR had not worked. And it seemed like the only option on the table was stem cell transplant. However, in order to have a successful transplant, the patient has to achieve a remission first. And since John did not respond to FCR (the gold standard treatment for CLL), I was pretty worried about his potential response to other therapies.

It was a discouraging and a scary time. Like I've said before, I tried not to show how frightened I was. But my insides felt like they were crumbling. Not all patients get good results from SCT. There are sometimes very serious side effects of SCT. And not all patients even survive SCT. At best, it is a very difficult ordeal. There are wonderful success stories, but most CLL patients I've become acquainted with over the last four years still consider it a last resort and try to avoid it.

While we were trying to come to terms with the situation and beginning to contemplate the possibility of transplant becoming a medical necessity, I was continuing to research all of our options. I had developed a friendship with another CLL patient who was in a clinical trial with CAL-101 as single agent (not in combination with any other drugs). He wrote to me in recommendation of John trying to get into a CAL-101 trial before seriously considering the transplant option. He had been preparing for transplant himself and wound up getting such great results from CAL-101 that he withdrew from the transplant program. I wasn't sure Dr. Flinn was involved in the single agent CAL-101 trial, so I contacted OSU and Dr. Byrd and got the ball rolling for John to consult with him. I told John that this was one decision we would not be making based on convenience. Then, at our next visit, I asked Dr. Flinn about the possibility of John getting into this clinical trial. As it turned out, Dr. Flinn was involved in the same clinical trial that was being offered at OSU and he said he would try to get John enrolled in it. We then waited a few weeks to find out whether or not he was accepted. And, of course, he was. (I think he wound up being the last CLL patient to be enrolled in that particular trial before it was closed to new patients. And then combination therapy trials were subsequently opened.)

Since the end of May 2010, John has taken one capsule in the morning and another at night. And those annoyingly large -- often painful -- lymph nodes have disappeared and not come back.  It is still utterly amazing to me that this little pill was able to do what harsh chemotherapy could not do in John's case. I am so thankful this drug exists and that it is working for my husband.

I asked Dr. Flinn today if most of his patients were getting the same results John and his mom have gotten. He said, "Not everyone, but a lot of patients are also getting good results."

CLL is so individual. It's almost like every patient has a different disease. One third of CLL patients will never need treatment. One third will need treatment at some point. And one third will need treatment immediately upon diagnosis. There are very benign cases of CLL and there are very aggressive cases. There are patients who live 25+ years with it and die of something else. There have been patients who lost their battle within the first year or two. And on top of that, not every patient responds to the same treatments. Some patients get years of Complete Remission from the same chemo that did nothing for John. Some CLL progresses in the blood and marrow. Other cases progress in the lymph nodes (more like a lymphoma).

The most universal symptom of CLL (benign and aggressive) is fatigue. Some patients have fatigue so severe that they cannot work or even get out of bed some days. John does battle fatigue (even on CAL-101). But it has never been so severe that he couldn't function normally or go to work. The only days he has missed have been during chemo. And even then he only took a long weekend to recover.

I have noticed that my "patient" gets better rest when we go away for some R & R. Being a business owner, he can't seem to get away from his stress mentally unless we get completely away physically. So I remind him of that now and then. But he has gotten better at making his health and well-being a priority. I guess that is one of the good things to come from his health issues.

I am so grateful John is enjoying good health. His medical stability over the past year has relieved a lot of mental and emotional stress (for me). I hope and pray his success on CAL-101 continues indefinitely. And I am very thankful to all of you who have prayed for that as well!


Randy Shannon said…
Great news Shari... as a Cal101 guy myself I am still doing well. I am on 150 MG dose. 19 months now-I am on the extended trial...back at work -off disability. As you know this CLL thing is so different in many people--- there is no "norm"... My lymph nodes occasionally flare- but subside- nothing I can't live with.

Great news! God Bless,
ms said…

Could you comment further on your experience of lymph node flare and remission while on CAL-101?

This is a subject of great interest to the folks at CLLSLL@yahoogroups.com where the side effects of CAL-101 generates intense discussion.


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