Barbara - so sorry the infusion doesn't seem to be working.

Would you be willing to try venetoclax? I'm on that now and have so much more energy than when I was on imbruvica. I don't know how long it will last but it seems to be better than the last medicine in that there are less side effects. The side effect I and others notice is a hint of nausea about an hour after eating but its not enough to cause vomiting or interfere with food or activities and doesn't last very long. The down side is that venetoclax has to be started with observation in the hospital.

I hope your blood numbers will be okay. Sometimes if we fight an infection or a cold, it shows up as fatigue, and not as sickness would when we didn't have B-PLL. The fatigue is the sign your body would give that it is still fighting something. Or infection could just show up as fevers that never get better (that happened to me and was a learning moment)

Hi bflattenor! My sincerest apologies for not answering your post sooner, me e--mail has been disabled for 2 months. You are so very brave facing and fighting B-PLL with such good spirits. I should originally have said I am living with chronic congestive heart failure, respiratory distress and total deafness. Your posts and all the others on Mayo Connect have given me the courage just to take these miserable obstacles one day or one minute at a time. I also have severe chronic pain but thanks to MC, am managing OK. We are all in some kind of boat but nothing can sink us! Best Wishes, Peggy