ACP186 trial

[scottyjean]

I reported earlier in the year that my husband has started on the trial of the above drug. The side effects he experienced were bleeding and upset stomach. These were resolved but it would appear that as his blood counts come back to normal his neotrophils are getting low and he has to have GCSF injections three times a week. We should have now transferred to visits every three months but it is necessary for them to keep a watch on his neotrophil count and it may mean an increase in the number of injections. I just wondered if there is anyone else on the trial experiencing a similar problem. In himself he is feeling very well and we were both starting to get back a 'normal' life but this is worrying.

[Hidden]

I have been on ACP-196 for 10 cycles and have not experienced the side effects noted in your post. I have randomly bumped into other ACP-196 patients in the same clinical trial who have not mentioned any side effects.

[scottyjean in reply to Hidden]

Thank you for your reply. It is reassuring to know that others haven't faced the same side effects and it could be that my husband will get past the current phase of low neutrophils. It sounds like that your experience on ACP 196 has been good.

[Hidden in reply to scottyjean]

Last year at this time my CLL/SLL had gone from stage 0 to 3 in a few months. I had lymp-nodes the size of tennis balls on my neck along with night sweats and fatigue. My immune system was so impaired that I only ate cooked foods - no salads, no fruit. When I was handed my CBC it was printed in red. I remarked about the unusual choice of color and was told the values outside of the normal range print in red. I was non mutated so the standard of care FCR was not an option. I could not use Ibrutinib as the FDA had not approved it for first line therapy and thus insurance would not cover. I felt that I had one foot in the grave and the other on a banana peel.

When I got into the ACP-196 Phase 1 Drug Trial, I felt like I had won the lottery. The other people in the drug trial that I have chatted with have had similar journeys from despair to positive outlooks. The lymp-nodes have srunk, my hematocrit and hemoglobin values are finally in the normal range. I can eat uncooked foods. I have not had any heart problems (A-Fib) or GI problems. I have had seven CT scans in 12 months - not fun. On the whole I can only be thankful given the alternative.

Best of luck to you and your husband.

[babswade]

My husband is now into his 9th cycle and has experienced no side effects. He still gets a bit tired but that comes with the disease and is manageable. Hope your husband is feeling better soon.

[scottyjean]

Your comments really help me cope. My husband is very optimistic and was very lucky to be put on the trial and he is so much better than he was before he went on the trial. All his other counts appear to be going in the right direction, he has no noticeable nodes and generally he feels good that is why it is so difficult to understand the neutrophil count.