ACP 196 treatment

[agneshun]

Hi Every one I am looking for people who are taking ACP 196

This is a trile medication for CLL my father is taking it 2016 november . i would like to now what is other people reaction for this medication

[Jm954 Administrator]

Hopefully some people will respond. Acalabrutinib is a more selective, irreversible BTK inhibitor that is specifically designed to improve on the safety and efficacy of first-generation BTK inhibitors such as Ibrutinib and is said to have less side effects. Not in common use yet, even in trials.

Please let us know about your father 's experience on this drug.

[agneshun in reply to Jm954]

Hello thank you for your reply

He has side effect which is lot of muscle pain some times is qiete bad he hardly can lift his arm up. Also his blood count is not so good it got better when he started the treatment and then stayed on the same level but now it got werse.His dr din’t said nothing for resent blood test just come again in 3 weeks time. My father general well being not so bed but he would like get better. I am not sure what other treatment he can have. He leaves in Hungary where Cancer treatment limited

[DoriZett in reply to agneshun]

I am on an Acalabrutinib clinical trial in the US. Side effects have been mild nausea, mild headache, mild diarrhea alternating with mild constipation, bruising, acid reflux, petechia.

Lymph nodes are 84% reduced 13 months into treatment. A recent finding has been microscopic blood in my urine. I am currently undergoing diagnostic testing, no cause has been found at this point other then wear and tear on my system from the Acalabrutinib.Will meet with the oncologist in mid-March To discuss this further. As I had SLL originally, my lymph nodes were greatly enlarged. My lab counts were not as extreme as someone originally diagnosed with CLL. All my labs are going in the right direction and the oncologist to satisfied with my progress. Wishing your dad well.

[Jm954 Administrator in reply to agneshun]

Muscle pain is a common side effect of Ibrutinib and can be severe.

It sounds as though your father may be losing his response to Acalabrutinib and he could ask about that at his next appointment. I understand treatment may be limited in Hungary (as it is in the UK) but it would be good to investigate possible next steps sooner rather than later.

With best wishes.

[Hidden in reply to agneshun]

I have been on this drug for 1 1/2 years No side effects. CT scans show no enlarged lymph nodes and labs are normal. There was a period of several days at first to where I had sore muscles, low grade fever, wbc up, tired, diarrhea. Since then, I do all the things as far as activity that I used to do. Great drug,-at least for me. and I hope for your father.

[agneshun in reply to Hidden]

Hi I am glad that is so good for you my dad is not doing well . He is on ACP196 since 2016 november. We have to wait for next blood test and see what happening.

[Breezie44]

I have been on imprruica for almost a year now. Everybody has different side effects from it. But I’ve had very few. Little Bone pain in my feet then again I am on my feet nine hours a day. Something you might want to look into. Not sure if they could switch him up at this point. Also I don’t know what he feels about medical marijuana. But I have found something with the high CBD helps with the pain. Best wishes to your father.