I am wondering if anyone has enlarged liver on acalabrutinib. I am on acalabrutinib since September 1st. My blood tests are much improved, but I feel now more pressure on the right side than the left side. Can acalabrutinib effect liver?
My spleen decreased only slightly from 21 cm to 17cm.
Thanks fo your replies.
Belkin, I can take a layperson stab at answering your question.
Cll cells can accumulate in all sorts of places, the most typical places we talk about are in the peripheral blood, spleen and our nodes. But they can also lodge in your liver.
I am guessing short of a liver biopsy or abnormal liver function tests, diagnosing liver problems due to Cll would be hard. The liver is hidden behind the rib cage and not easy to feel with touch of the hands.
If you did have any infiltration of Cll cells into your liver, I would expect Acalabrutinib to be chasing those Cll cells into your bloodstream. The fact your spleen is shrinking is a sign acalabrutinib is doing just that and it seems unlikely to me acalabrutinib would work on Cll cells in the spleen and not the liver. I think the reduction in spleen size you describe going from 21 cm to 17cm is more than a slight reduction, you are halfway back to normal.
I would certainly tell your doctor about the pain you feel in the area of your liver. It doesn’t sound acalabrutinib or Cll related to me, particularly if your liver function tests are normal, but I am not a doctor. Spleen discomfort from Cll is more common, often a result of the spleen pushing on other organs like the stomach.
When you mention "pressure on your right side", is it behind your ribs? And are you taking other medications that also are metabolized in the liver? Acalabrutinib has been reported to cause "abdominal pain" but I think that would be lower than your ribs. Has a CT scan ever shown enlarged lymph nodes in your chest/abdominal area? I wonder if you are "feeling something" as lymph nodes react or change size due to the treatment. As cajunjeff said, please report this to your doctor if it continues, worsens, changes.
Sofia, have you ever seen any detail of the ‘abdominal pain’ the side effects list (not the diarrhoea or constipation) mentions? I have had pain on my left side since starting Acalabrutinib. CT scan showed all looked fine & that my spleen had shrunk from 18 to 13cm in 8 weeks. No pancreatic issues either, which had been mentioned as a possibility. However, I still have this tender spot , upper left abdominal discomfort. My appetite has reduced due to full feeling and I’ve lost weight. Next step will be an endoscopy but I’d be keen to avoid that. If only I could find some information on this ‘abdominal pain’ they talk about! My CLL consultant doesn’t currently link it to the Acalabrutinib, but I didn’t have it before I started. Nobody seems to have had this problem though. Thank you.
I will look for details, but likely they are buried inside study data, if people even went into detail on their pain. But "abdominal pain" is seen as an "adverse event" for up to 15% in patients on Calquence monotherapy, with "severe abdominal pain" being 1.5%. These numbers could have been much lower when the drug first came out, so it's understandable if this is new-ish data, that your onc isn't yet aware of it. Here's a Medscape link to show your doc if needed. This link isn't dated, but Medscape is a commonly used tool for health care in the US at least. Medscape uses FDA approved labeling information as well as current major medical literature as its' source data. Patients can register for a free account if you are searching for something on there that asks you to log in. It has editions in 5 languages, and an app if you prefer using those to a tablet or PC.
reference.medscape.com/drug...
Medscape's been around since 1995. It's now owned by WebMD. It has an interesting history IMO, if you enjoy some of the business dealings of the dot-com boom & bust years.
ncbi.nlm.nih.gov/pmc/articl...
So I haven't found data on the pain per se, but I did find something that may explain at least some instances of GI side effects/adverse effects of BTK inhibitors, First, we have to remember that our immunity is not just in cells circulating in our blood. Skin, respiratory tract, and GI tract have immune cells too. Agents like BTK inhibitors can affect the BTK in other organ systems. So patients can respond with various skin, GI, and respiratory symptoms if their body's' BTK in cells of those organs, are also affected by the BTK inhibitor being taken for its' effect on the CLL cells. I was reminded of this "immune cells in multiple organ systems" when I found this study discussing how a deficiency of BTK contributed to colitis:
And reading about immunity in the gut specifically, there are T-cells & lymphocyte precursors like macrophages lining the gut wall:
immunology.org/public-infor...
IMO it is reasonable to think that disruptions of normal gut cells could cause various side effects. Diarrhea is noted as one in BTK inhibitors and could be due to disruption of BTK, if not a direct irritant effect. So some sort of GI pain syndrome, varying in severity, is possible depending on how a particular person's GI system reacts to BTK inhibition in those non-CLL cells.
Off Ibrutinib .. on Acalabrutinib 
One Year Anniversary on Acalabrutinib (Calquence)
Need advice on Acalabrutinib will start treament next month
