For those who may have an interest, I started on the BOVEN clinical trial at Sloan Kettering. Trial aim is to achieve MRD with a long remission. People at Sloan are top notch so far. 37 patients total in the trial.
By background is diagnosed February 2016. On WW until now. 13q deleted, un-mutated. Had two incidents of AIHA and was treated with prednisone ( A devil drug in my opinion due to its side effects if taken longer term).
I started a month ago. Zanubrutinib tabs 160 mg BID with no negative reactions so far. This drug is not FDA approved except experimentally but shows promise as an ibrutinib “replacement”.
At the same time I initially did a ramp up over two days for the Obinutuzmab which was successful leading to 2 more infusions at a step up pace. Monthly infusions on going. So far so good, fingers crossed. I am now starting Cycle 2.
My nodes, biggest were in the groin area and armpits with smaller ones in the neck , are in effect gone. Spleen cannot be felt by the doctor. Fatigue is gone. So all good so far. Blood work looks good with elevated WBC and ALC first increasing and now falling back down, hopefully headed to a good place, an anticipated result I am told. Platelets above 100 which is good got me since those counts are usually low for me.
In a month I start Cycle 3 in which Venetoclax is introduced via a five week ramp-up from 20mg to 400mg. Depending on your risk level you are either hospitalized during the ramp ups or, hopefully, can do them as an out patient.
My biggest complaint so far has been the bone marrow biopsy. It was excruciatingly painful when it was done. My second one hopefully will not be as bad and they may give me something more to cut out the pain. I fear the next one! I’m not a coward, but.........!
That is my story so far. I will update periodically Incase of any interest.
Best to all in your CLL adventures.