Atypical CLL

[jerryuk]

My Dad was diagnosed with CLL but had no symptoms for about 11 years. However, things moved quickly when symptoms did appear. He was started on FCR but it was not as effective as the Dr had hoped. (He had 3 doses.) he then had Rituximab and Bendamustine but again, his lymph nodes and spleen are still enlarged and the Dr says it's not looking typical of CLL. He's had a full CT scan, bone marrow test, etc... He starts Immunoglobulin next week as his immune system has taken such a battering and he has had cough after cough where the antibiotics haven't really touched it. He is so tired and sleeps constantly. What else might be going on? Any advice?

[Cllcanada Top Poster CURE Hero]

Has he had a FISH panel run to see if he is 17p or TP53 mutated? Patients with those markers tend to do poorly on FCR or bendamustine/rituxan BR, like you indicate.

I would also request a node biopsy...

~chris

[sumok]

in our case, a cough seemed to have been a fungal pneumonia that took advantage of an immune system dip. a CT scan diagnosed that - docs never heard anything when listening and an x-ray did not show it clearly.

agree on the FISH to check for 17p etc. for which there are now alternative and far more successful drugs.

best wishes!

[dwolden]

We have had cough off and on since 6 cycles of fcr. First time it was apparently eosiniphilic pneumonia, this time bacteria, he always seems to have a bit of dry cough. Treated with steroids for eosiniphils, lately antibiotic for bacterial pneumonia. Based on our experience and some reading, that rituxan can be a tricky one for cough and pneumonitis. Have to figure out cause if pneumonia, and frankly we have had relief of cough with strong codeine-based cough remedies (the cough was exhausting). Good luck and I hope you have a good pulmonologist on the team.

D/