Imbruvica Failing After 26 months

Dave - still looking forward.

Today the oncologist told us what we had suspected, but didn't want to hear. Dave's been having increasing difficulty with fatigue, infections and orthopedic issues, so his doctor ordered some new studies and  they showed that his CLL has moved to a new, more serious level. Since this blog has two audiences (friends & family and fellow CLL travelers) I will start with the basic, layperson's summary, then move on to the medical details.

The prognosis is not good and the options are limited. At this time, the plan is to "keep our powder dry" by which the doctor means to keep using his current medication as long as possible (maybe another month or two,) then start the next medication, which is expected to work for about a year. At that point, we can hope for some new, yet-unknown treatment, or a bone marrow transplant.

Dave has some skeletal issues (degenerative disc disease and osteopenia) which are causing him significant pain. His sciatica has kept him in the house for the last month. And of course, he has fatigue & frequent skin & respiratory infections. But he's still enjoying life and is hoping for a miracle.

Dave's hematologist/oncologist ordered a new FISH Flow Cytometry (his third since diagnosis.) Dave's initial FISH Flow Cytometry showed only a 13q deletion, but he has since acquired a 17p deletion, with IgVH unmutated, and CD38 great than 30%. He's been on Ibrutinib for 26 months and still has oddly reasonable bloodwork, but enlarged lymph nodes, and the other issues mentioned above. In a month or two, the doc plans to start Dave on Venetoclax.

More details when we get 'em.