My partner was diagnosed with CLL in July at age 56 after a standard blood panel showed elevated WBC. Since then, we've been on a roller coaster, as he has had enlarged lymph nodes and, more recently, skin lesions that seem to have been the result of an infected bug bite (but looked more like bubonic plague and landed him in the hospital for 2 days). Other than that (Mrs. Lincoln, how did you enjoy the show?) he's been feeling good. He's lost 25 pounds in the past six weeks, which he assures me is the result of extra salads and gym time, but seems awfully fast to me. He's had the full gamut of blood tests, which confirmed that he has unmutated IgVH but no other negative markers. And we moved from our local oncologist to a NYC based research practice, which has been like night and day. They are on call 24/7 and the doctor or nurses speak to him almost daily so we feel in very good hands. They also sent him to a pathologist/dermatologist who finally got the skin issues under control. And they are teaching us how to deal with what is clearly a messed up immune system.
As for me: For the first few months, I felt like I was pursuing my PhD in Internet Medicine, learning as much as I could and making myself crazy in the process. Right now my hubby is feeling very positive, and I sometimes feel like either the voice of doom or the only adult in the room. He doesn't seem to be taking on board that the unmutated CLL has a more difficult prognosis, but on the other hand, his positive attitude is clearly helping not only him but other family members as well. So I keep my worries to myself for the most part. Wonder how others manage the roller coaster aspect of all this?
Anyway, I'm happy to have found companions on this journey and wish all of us swift sailing and healthy outcomes!