non Hodgkin Lymphoma

[agneshun]

Hello everyone

I would like to find people who are on ACP 196 drug for Non Hodgkin Lymphoma

Agnes

[fatbaldingoldgit]

Hi Agnes..I'm on the ACP-196 (Acalabrutinib) trial for WM...since Dec 2015..so far it's working well with no side effects (that I can detect)...:-)../David

[agneshun in reply to fatbaldingoldgit]

Hi David

It is my dad is in on the trial he started October 2016 he has some side effect he has some rashes which is itches , but other wise he is ok. Do you know how long you have to be on this medication?

[fatbaldingoldgit in reply to agneshun]

Hi Agnes...I'm sorry too hear that he has a side effect. A rash is listed as common affecting 5-10% of patients. However, this could also be a manifestation of an allergic reaction so I would ensure that his Haematologist/Oncologist is informed. The trial for WM patients has been extended to 5 years because we are all doing so well. The drug itself is designed to be taken for a lifetime because there is no cure for WM. Is he taking it for CLL?

[agneshun in reply to fatbaldingoldgit]

I am a little confused I don't understand what is a different between CLL and Non Hodgkin Lymphoma He has non Hodgkin Lymphoma

[Cllcanada Top Poster CURE Hero in reply to agneshun]

NON Hodgkin's Lymphoma (NHL) is a classification of a number of lymphomas... that sub divides to B cell and T cell

CLL is a B cell subtype of NHL...it looks like a leukemia, but it isn't a true leukemia...

More here on the various kinds

cancer.org/cancer/non-hodgk...

[kreale]

Hi Agnes,

My husband was recently diagnosed with Non-Hodgkins Lymphona (non-clonally related to his CLL) and is currently undergoing R-CHOP. Did you have chemotherapy? Or only ACP 196?

[agneshun in reply to kreale]

It is my dad who has non /Hodgkins Lymphoma his been diagnosed 2010 and he had chemotherapy which was worked well,he had remission for 4 years then he was on a wait and wach period for 2 years which is ended last year October. He started on a trial medication called ACP196 .Now he has some side effect which he is complaining but not so significant. He will having blood test soon and we will see how is the nedication work

[Hidden]

I started on ACP-196 (Acalabrutinib) February 2015. No side effects or I just don't notice. My CBC is pretty much normal. I still have lymph nodes greater than 1.5 CM but not by much.

[mgh348]

I have been on acalabrutinib for 8 months for CLL. ALC is still going down. Feeling better and starting to have more energy. Initial side effects of headache and inflamed finger joint, some diarrhea, have mostly resolved.