Hello Elaine.
My name is Sherri and it seems as though we have a similar path. After many months of testing, poor labs, and enlarged lymph nodes and spleen, I was diagnosed this past December with CLL, a diagnosis that falls under the lymphoproliferative disorder umbrella. A bone marrow & lymph node aspiration confirmed the diagnosis.
Because there are many stages to this and every one reacts a bit differently, there is no one size fits all category. I can tell you the treatment most common seems to be a “watch and wait” path. That did not apply to me, as my labs and body indicated treatment was needed. I tried Gazvya which immediately did not work. I just finished my first month of Venclexta and 2nd dose of Rituxan and I am finally seeing labs within normal ranges. I can add that anxieties are real and I found myself not sleeping waiting for the results-sort of waiting for another shoe to drop. Sleep is very important. So is living your life as close to normal as possible. You have to listen to your body. You know it best. If you feel it, act on it. If it’s not there, celebrate that moment by living. Keep asking questions. I’m happy to talk or text. I hope this has helped in some small way. I feel like I am still learning, too.