I was diagnosed 14 months ago and Sprycel was my first line of medication. I have been happy with it and it's doing the job. My PCR is "unquantitatable" and my blood counts are good, the only outliers being red cells, hemoglobin and hematocrit - so just a mild case of anemia that I can generally cope with. I also get the dreaded skin rash, on my forehead and chest, but I can keep that down to a dull roar with corticosteroids.
I am male, 59, otherwise healthy, and I keep myself active by cycling up to 100 miles a week.
Until a few weeks ago....
After a short, relatively mild cold that I cought in London I went on to develop Community Acquired Pneumonia. I have never had pneumonia. (Avoid it if you can - it's a bear.) All my white cell counts prior to the onset of the disease, abs neuts, etc, were mid-range normal. At diagnosis of pneumonia, my CBC showed my immune system responding appropriately.
My primary care physician looked up Sprycel on Uptodate.com and I was surprised to see "Risk of Infection" listed as the #2 side effect. It included a recommendation that patients on Sprycel avoid crowded places and contact with people who have infections, colds or flu. This was news to me - there is no such warning on Bristol Myers' package inserts or website. "Infections" shows up way down their list of side effects under "Other."
This has gotten me thinking, and I looked around at some other websites. The Cleveland Clinic warns Sprycel patients that they should seek immediate medical attention, day or night, if they have a fever of 100.5 degrees, or even a "very sore throat." They too warn of the risk of exposure to infectious agents in large group settings.
The EMS medical website puts "infections" at the top of the list of side effects, even above pleural effusion and blood count surpression.
In an effort to avoid the onset of pleural effusion by preventing an upper respiratory infection, I have become somewhat maniacal in washing hands, avoiding touching my face, using gloves to pump gas, even wiping down restaurant tables and airline seats with Chlorox wipes, and this has helped prevent me from catching a cold in over 18 months. But I took these precautions because my intuition told me to, not because of a Sprycel manufacturer's or my oncologist's warning And having healthy white cell numbers lead me to believe that my immune system was normal.
Yet these other respected websites suggest that Risk of Infection on Sprycel is independent of Blood Counts.
So all this leaves me wondering whether there is an increased risk of infection for someone like me taking Sprycel with normal white cell counts. And what are the reasonable precautions to take. Can anyone shed some light on the subject?