I was diagnosed with CLL in March of 2021, and also am unmutated. (There are a couple of other markers, but I don’t have papers in front of me.) I have Splenomegaly as well. I have fatigue, night sweats, chills, and shortness of breath. I have well-controlled asthma. For the last several weeks I have not been able to breathe well. It never stops. I knew it wasn’t asthma because I am not sick with a cold/flu and have all my meds. I have had pneumonia enough times to know it wasn’t that either. I finally went to my primary doctor who prescribed 40 mg Prednisone 5x a day and a chest X-ray. The X-ray states: “Scarring subsegmental atelectasis in the left lung base. The lings are hyperinflated but clear. Mild pulmonary hyperinflation with subsegmental atelectasis in the left lung base and no active chest disease.” The nurse called and said since I didn’t have pneumonia, everything was fine, and I would eventually “likely” get better on my own. (I already knew it wasn’t pneumonia.) Four weeks ago my white blood count was 14.07 and two days ago it was 17.5. I have lost 60 pounds over the last year and do not drink. I had pancreatitis in March of 2020 from a medicine for my knee and had COVID-19 in October of 2020. Beginning in January of 2021, I lost my hair for several months (more than half) but that has stopped. Considering all of this, are my lungs a concern? Breathing is tough, but does it have anything to do with CLL??
Answer: There are several things to address based on the information you provided. Our first question is are you seeing a CLL Specialist? If not, please consider doing so and/or getting a second opinion through our free Expert Access program.
There are two separate issues in what you have shared:
- Your difficulty breathing/ question about pneumonia.
There is definitely a correlation between pneumonia and CLL (please make sure you are receiving your pneumonia vaccinations as indicated), but CLL does not cause difficulty breathing. The next thought is, could the scarring on your lungs be due to your previous COVID-19 infection? Any possibility of it being residual long-hauler symptoms? If this is not your physician’s area of expertise, maybe ask if you can be referred to an infectious disease physician in your area that has a good deal of experience with COVID and can rule out long-haul syndrome.
- With you being symptomatic with several CLL “B Symptoms,” has your physician recommended that you start CLL treatment instead of remaining on watch and wait? Please ask that question right away!
That should be plenty to give you a head start! Please know we are here for you should you need us.