ACP 196 Acalabutinib

[agneshun]

Hi Every one

My father is on ACP-196 trial since 2016 November. I am looking people who also taking this medication and what is there experience with this trial?

[AussieNeil Partner Administrator]

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Neil

[agneshun]

Thank you

[SOLLYTHEGOLLY]

Have been on Acalabrutinib since September 2020, and doing pretty well. Side effects have been some petechiae on the legs and arms which are now fading away, and some blood blisters in the mouth, which were more of an irritant than painful. Still get the odd blood blister, but now less frequently than at the start of the treatment. Headaches were an issue at first, alleviated initially by paracetamol, but then read about coffee helping. And it did. The headaches had mostly gone at the three week stage. The coffee addiction remains.....

At the start of my treatment I had no visible nodes, but my spleen would have won prizes in the county fair. After three weeks, the spleen was back to normal size. Blood counts started to improve, with WBC decreasing and Haemoglobin increasing.

I would say that I feel a whole lot better than I did in early September, just before I started treatment. My anxiety has decreased and my energy levels increased exponentially. All at the cost of taking a few tablets per day.

Was also prescribed Allopurinol to protect my kidneys, which would have to deal with the rubbish created by the Acalabrutinib. Also Co-Trimoxazole and Aciclovir as prophylactics for possible bacterial infections and anti-shingles respectively.

Hope your father does well on this medication. I certainly am. Please give him my best wishes.

Jim

[Hidden]

I, too, have been on Acalabrutinib since September on a trial as I had to stop taking Ibrutinib. Had my first CT scan since starting in September and I am node clear. I have tons of energy, a nice change, and feel well. I had occasional headaches at the beginning of treatment, coffee helped in my case, as well. Now headache free. Hope your Dad does really well.

[Eucalyptus22]

I too am on Acalabrutinib since September 2020. Was quite poorly when I started the treatment and had to have 2 blood transfusions. Side effects have been minimal- no headache, a little bit of petechae on body, a 5p size spot of bleeding under the skin on my hand but thats all.

I was on Co-Trimoxasole but had a nasty reaction to it so had to change that drug.

Have to drink a lot of fluid to keep kidneys well flushed.

I now feel well, all visible nodes gone and have lots of energy and have gained some weight which was badly needed. Great appetite now!

However, at 2 month marker my platelets were low at 111 and tomorrow I get results of the 3 month blood test.

Good luck with Acalabrutinib, I think its a wonderful drug.