Abdominal pains and fatigue and effect of Acalabrutinib

[JEEA]

I began taking Acalabrutinib on Oct 7, along with Co-Trimoxazole 160 mg twice a day on Monday, Wednesday and Friday and Aciclovir 200 mg 3 x day. I took Allopurinol for 4 weeks and then it was stopped.

Initially, I seemed to have no side effects, not even the headaches that others have reported. All this was just as well, as I was at the hospital 2x a day for my very ill husband, who thankfully is now at home and recovering (under the Virtual Hospital (didn't know that we had one!) who send in Hospital at Home for IV antibiotics).

At my first follow-up on Nov. 6th, my Haematologist wrote that there was a marked increase in lymphocytes which went up to 283 x 10 9/L but that this was normal after first starting treatment as it was releasing lymphocytes from other areas such a the lymph nodes and bone marrow.

In late March, well before I started treatment, I started having unpredictable stomach nausea, which would last for about 1/2 hour until I threw up, and then I would feel fine again. My GP sent me for an endoscopy which found no problems, not even acid reflux. They did a stool sample, which was also negative, reviewed the CT scan I had done and found nothing ominous. Bloods showed raised liver Ser alk phos liver enzyme and Serum gamma GT level . I was prescribed Omeprozole which managed to stop me being sick, but the nausea continued at random times throughout the summer and early autumn.

About 6 weeks after I started treatment, I felt that the nature of the stomach nausea changed. I found that the episodes lasted longer and I often had very strong abdominal pain. My GP changed my medication to Cyclizine to control the nausea and asked for an urgent abdominal ultrasound. Blood showed lymphocytes still high 205 and still the same liver abnormalities.

Yesterday, my GP phoned to say that the ultrasound showed a grossly enlarged spleen, and a solitary gallstone measuring about 1 cm. Pancreas etc did not show problems nor other organs. She has sent the results to my haematologist. I am having bloods taken again tomorrow for my Haematology appointment on 18th December.

So it looks like my enlarged spleen may be what is causing me the intermittent stabbing pains which at present are happening almost every day with the odd day off? I am curious what others have experienced.

My other problem is often very low energy indeed, which I guess is probably due to the fact that my Haemoglobin is now 92. At times I am moving very slowly, and am so grateful to have a Blue Badge for parking, which my McMillin nurse managed to help me get just as I started treatment.

So I am wondering if all this is normal for this stage of treatment? It is the first time I have had an enlarged spleen . Hopefully all this will improve as the treatment continues? And I am curious how the current stomach pains are related to the ones I had in the spring, when my spleen did not seem to be enlarged.

Any thoughts appreciated. Thank you. Eleanor

[cartwheels]

I think it's the antibiotics, I recently started the same antibiotics along with veneticlax and had to pause treatment after one week due to severe abdominal pains so much so they thought I had tumor flare and I had pet scan and bone marrow biopsy. After halting treatment all calmed down after a week although I was still sore from the bloating around my chest and stomach etc . They restarted veneticlax but without the antibiotics and two weeks in going up to 100 mg tomorrow I have been absolutely fine . The antibiotics are very strong ones and only used as precaution and they told me last week they have researched and found other cases of what happened to me .Hope all goes well

[JEEA in reply to cartwheels]

Thanks so much Cartwheels. By antibiotics, I guess you mean the Co-trimoxazole ? Good to hear that things calmed down for you.

What I don't know is if an enlarged spleen in itself could cause intermittent pain. All feels so complicated! It will be interesting to hear what the haematologist says.

[mrsjsmith]

Eleanor so sorry you and your husband are going through this.

Co-trimoxazole could be the culprit for some of your issues. I got bad itching when I started treatment and that was blamed as the culprit. There are alternatives you can get.

Colette x

[JEEA]

Thanks so much Colette. That is what Cartwheels thinks as well. I'll ask the Haematologist.

What I don't know is if an enlarged spleen in itself could cause intermittent pain. My retired GP friend thinks it can cause pain, but not intermittent pain. All feels so complicated! Sigh.....

I felt so good at the beginning of June when I finished the Exercise research and now I feel like I'm dragging --doing things in slow motion at times. Eleanor

[mrsjsmith in reply to JEEA]

Luckily I have a normal sized spleen but I understand from others that an enlarged spleen is uncomfortable bending forward. How low is the pain ? Mine turned out to be diverticulitis and that is an occasional pain when lying in bed.

Hope you get some answers soon 🤞and don’t beat yourself up because it’s cold and dismal and world news is depressing so just stay warm and cosy.

Colette