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.
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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.
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.
Thank you, Jeff. I'm feeling ecstatic. I know that this result probably doesn't correlate with PFS or LTS or MRD-, but damn, does it ever feel great to have something in me that's basically saying "f you" to this cancer, even if only for now. That's all we need with this disease, right? More "nows" until we expire from something else or a cure is found.
Thanks, Stuart. 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.
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..
Bless you, Stuart. Bless us all. No matter what, I'll get some time out of this, and we'll all get some data to help us in the future. MRD- would be great. I'd take years of maintenance on Acalabrutinib and Venetoclax to get me to the next innovation. So happy to hear about your Ibrutinib response and tolerance! Glenn
I hope so. It's really amazing how these three drugs are supposed to work together, synergistically, to rock this cancer. Thank you for your question about my username. My real name is Glenn. I learned something today, and that always makes for a great day! "Saba" is our dog. She is a retired guide dog breeder and came to us with her name. She's a beautiful being. I can see why she was a breeder. So gentle and calm, except for a startle reflex when you touch her and she doesn't see you coming. This is probably why she had only two broods. Any dog that approached from the rear would startle her!!! Is "Saba" gender-specific? Used only for grandfathers? "Circles" is our cat.
Thanks for being in this trial. I do think you are on a (forbidden word?) cure track. I am a "trial" of one: Ibrutinib, Venetoclax, off-label drugs, and extensive herbal remedies. I am reducing my tumor load much more slowly than you will, but taking much smaller doses also. I hope to reach the same endpoint as you eventually stop taking these miracle new drugs.
Grandma in Hebrew is "Softa"; This is a transliteration of the Hebrew letters. Askenazie Jews, like me, seem to have a high genetic pre-disposition than most to CLL. Ironically, some gene mutations that lean toward some diseases also protect against other diseases. So often mutations are are mixed bag.
Interestingly, I have a small amount of Ashkenazi ancestry in me, probably from my mother's side which has deep roots in Eastern Europe.
Thank you for "Softa". I hope we both reach the best endpoints possible. I'm not thinking "cure." It would be a lovely surprise. I'll take even just a few years without these damn lumps and the fatigue that started near the end of my W&W.
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.
Good advice for all. I shared a pic with my team and I'm on a standing order for weekly bloodwork. Got my first one done on Tuesday. They should have the results by today or tomorrow. The headaches went away after a few days and I felt absolutely terrific until last night, the night after I received my Flubolk and Pneumovax23 vaccines. Feel like hell today. We'll see how tonight goes. If it's another bad one, I'll call the them tomorrow.
So good to hear how well you are doing. I think one can tell from the begining how things are going to go if it works very well and does not bring lots of side effects.
A question because you're at a center of excellence ... Did they discuss with you why they were giving you Pneumovax23.. only asking as I thought another type of vaccine, the Prevnar was often the chosen one for people with CLL or in treatment.
There's a Prevnar 13 that offers protection against only 13 strains and then again a new Prevnar 20 from Pfizer which has been given some type of fast track approval by the FDA and I don't know what stage of approval for use it's at in the US.
Would be interesting if anyone has info on all this.
Fantastic results! I understand that acalabrutinib like ibrutinib but with less side effects. I was on a trial with the same meds except substituting ibrutinib for acalabrutinib and I was on the obin first. I didn't quite get to MRD- during the trial period, but blood is MRD- now. They kept me on ibrutinib, but not venetoclax so that is a difference, too. There was talk about it and then there was a decisive decision to go just ibrutinib. Anyhow, many people got to MRD- on our trial, and I hope you do, too!
Looks like I’m a month ahead of you Circlesaba. The lymph nodes on my neck went down in a little over a week on Acalabrutinib. Just finished my third infusion of Obin last Tuesday. I had problems with the premeds (Benadryl and steroids) for the first infusion over two days. For the second and third infusion, they lowered the steroids, and gave me Zyrtec instead of Benadryl, so I did fine. I start the Venetoclax in a week and half. Even though my WBC is dropping (so far from 306 to 240k) it is still high, so I will probably be in the hospital for two nights so they can monitor. Hope you do well with obin!
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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. 
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