I started my Venetoclax journey September 7th. A few bumps on the way up from 20mgs. to 400 mgs. And a few more bumps at 400mgs with lots of fatigue and back pain. Dr Mato lowered my dose 10 days ago to 300mgs and that has made a world of difference. Feeling stronger and not as fatigued. Feeling more like me again! I went to UpENN this past Friday and all my blood work looks great. Dr. will do a PET Scan in a couple months to check on those pesky lymph nodes, but he said I'm having a great response to Venetoclax! On the road to remission and hoping it lasts longer than previous treatments, but whatever time I get from it, I'm grateful!
So glad for this site, this community of kindred spirits who fight the good fight every day and then share their knowledge with others. I can truly say that I found the courage to confront my doctor about the choice of treatment options, (he was pushing Ibrutinib and I wanted Venetoclax) and recently about lowering the the dosage due to side effects, all because of the great information I received here!
I am very grateful for all yourencouragement and support. May we all live long and healthily!