Not even a week on Acalabrutinib and...WOW!

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.

38 Replies

oldest • newest

Lewis78

in reply to Circlesaba

2 months ago

That sounds like a very promising combination.. Im hopeful these three hit combos hold promise to be curative if not give decade long remissions.

You’ve got two of the latest and best therapies on the market with Acalabrutinib and Venetoclax.

I’ve heard lots of promising things about Venetoclax but not a great deal yet about the newer generation of Ibrutinib other than it works the same magic with less side effects for some.

I’ve been on Ibrutinib for two years and it’s worked very well for me and all my levels are back in the normal range and have been for most that time.

I wouldn’t be surprised as long as you have no toxicity issues you haven’t reached MRD status within 18 months with that trial.

Best of luck I hope it continues to work really well for you and offers a cure..

Keep us updated

Stuart

tsvieps

You do not want those lumps to go away too fast or you can end up with a damaged liver. I do expect you are getting monitored with a liver/kidney chemistry panel.

I started with a WBC of around 300k and lumps that could be seen a block away. I experimented by starting with a low dose of Ibrutinib and found I got good efficacy and no liver damage. But my body symptoms were also a good indicator. If my fevers and diarrhea were tolerable to me, that was also a pace that protected my liver and kidneys.

You do want you nodes mostly clear before starting Venetoclax. It can work too quickly and kill people. Your docs watching the trial certainly know that. But you should also be aware of the potential problem. Everyone's body is different. Listen to what YOUR body is saying. Back off if you are reacting too much. Do not wait until your next doc appointment. Slow it down and call your medical team and explain your concerns. If your nodes are still shrinking, your dose is high enough. Help your docs by monitoring your own reactions. You will have a good idea with Acalabrutinib alone and your blood tests how fast it is safe for you to reduce your nodes and WBC after the later first goes up as the nodes shrink.