Hi, all. Well, I've been in the Dana-Farber clinical trial for almost a week, starting with Acalabrutinib. This weekend, after four full days on it, my right ear started popping, like when changing elevation on a flight or as an infected sinus clears. I was wondering if this was coincidence. Interestingly, my right parotid had been my most troubling symptom because it swelled so much from lymph fluid it hurt. It also plugged my ear. I've had to have fine needle aspirations done twice on it. Suggestion for all: Don't ever agree to a parotid aspiration without at least two professionals in the room, one to provide guidance and the other to target the needle. The first one I had was awful because the butcher/doctor just kind of "poked and prayed." That's when we knew I was no longer going to be treated in my small home city that's only 3 hours away from both New York and Boston!
Anyway, so, the parotid is down. The biggest visual change is that in less than a week, the near-ping-pong-ball-sized node on the right side of my neck has almost completely flattened out! Also, my armpit nodes are way down. Wow. This is powerful stuff.
I was experiencing headaches until two days ago when I resolved to drink at least a gallon of water a. Poof. No more headaches. That has been my only negative side effect so far.
So, the Acalabrutinib is chasing the cancerous b-cells out of the nodes and into the blood, killing them along the way. On Sept. 27th, I start Obinutuzumab, which will hunt down those b-cells in my blood with their "brilliantly lit" with CD20 that Obinutuzumab is searching for. Time for cancerous mid-life b-cells to die! Venetoclax will be added in late October to add some more big-time punch.
Needless to say, I'm excited, even at this early stage. How rewarding to note a reduction in node size so quickly! Wow.
I'm taking Allopurinol to control Uric acid as a result of the destruction of cancer cells. I'll be on just that and Acalabrutinib until the end of the month when I add Obinutuzumab. A month later, Venetoclax is added to the mix. I stay on those as tolerated for up to 24 months or until MRD-. If I don't get to MRD-, the trial will keep me on Acalabrutinib and Venetoclax until either disease progression, MRD-, or I can't tolerate the drugs. 
Circlesaba, from my first week on Ibrutinib I too seem to have lost the neck nodes, but my side effect was joint pain which has at this point mostly faded, but I hear will return on and off.
john from the IV trial
Oh, well, "good news and bad news" then? I do have some pain in my right knee, but it's the exact same pain I had in spring when my disc golf season. I didn't get out at all in August. Too much travel. The pain went away after a month of exercise. Hopefully it's the same thing.
How has Venetoclax been for you?
Won't be on venetoclax till December
john
I start in late October and will post my reactions and results here. Best of healing to you, John.