Great Article on CAL-101 Phase One Study

http://updates.clltopics.org/4156-cal-101-latest-update-at-ash-2011

Both my husband and his mother are participants in CAL-101 trials. They are now both in the extended phase, but began in separate studies. John's treatment: CAL-101 as single agent. Marian's treatment: CAL-101 in combination with Rituxan.

Both patients are presently doing well. However, Marian was one of the 24% who had a very serious bout with pneumonia last January. What this article described is exactly what happened to her. Her primary care physician diagnosed her with bronchitis and dehydration, treated her and sent her home. We then got her to Dr. Flinn immediately (because she got worse overnight) and he admitted her with a pneumonia diagnosis. It took three weeks in the hospital to get her on the road back to health. But she is now fully recovered, no recurrences of any lung inflammation and says she feels great.

Comments

Mr Clint said…
Hello, My name is Clint and I have CLL and am being considered for one of these newer trials. I was wondering if your husband mother had any side effects from the CAL 101? Did either of them have large abdominal lymph nodes? I do and am wondering how effective this drug is on large nodes.

Best of luck to you both with your treatments.
Shari said…
Hello, Mr. Clint!

My husband has had no side effects from cal-101. However, his mom had pneumonia in January of 2011. She was in the hospital for three weeks. To read a detailed account of her ordeal, you can click on my archived posts from those dates. I documented everything on my blog. One of the side effects of cal-101 for some patients (24%, I believe, in the phase I study) is lung inflammation. It is very important not to ignore any respiratory symptoms or coughing because of this possible side effect. My MIL saw her PCP for her cough and was misdiagnosed with bronchitis when she actually had pneumonia. He also diagnosed her with primary dehydration and secondary hypercalcemia. When, in fact, she had primary hypercalcemia and secondary dehydration. Each can cause the other and the assumption that dehydration was the cause of her hypercalcemia was a wrong conclusion. I was pretty certain dehydration was not her primary issue and contacted Dr. Flinn immediately. He advised me to get her down here to Sarah Cannon (she lives in Evansville, IN) where he could treat her. He admitted her and ordered a chest xray, which showed the pneumonia in both lungs.

She ceased taking cal-101 for three weeks and resumed at a slightly reduced dose after she recovered. She has not had any recurrence or problems. Currently she is taking 100 mg. cal-101 morning and night and doing beautifully. But the lung inflammation risk is something very important to be aware of.

Marian only had a few enlarged nodes. However, my husband's main CLL symptom was enlarged lymph nodes throughout his body. You can search my blog for specific posts. I have shared before and after pictures of his neck very recently. December or January, I think. If you click on any archived month, you'll get a drop down menu of the posts in each. You can select any archived post you are interested in reading at any time.

My husband's lymph nodes did not respond to FCR, but they responded immediately (within days) to cal-101. It has been like a miracle drug for him. Thank you for your kind words and I wish you all the best in your treatment as well!

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