My Cll progression

[Ninagram]

Hi have been on wait and watch since 1908 my WBC has increased and platelet count is dropping. Being evaluated for a clinical trial of ibrutinib and venetoclax anyone on this and can tell me how you are doing. Thank you

[Cll4me2]

Hi Ninagram!

I just started in this trial NCT02910583. I'm only in week 2 of the 1st cycle. But the night sweats are gone (read sleeping like I have not slept in years!) nodes in my neck are practically gone! Only side effect is something like indigestion, but I'll take it! Maybe others will have longer term comments.

Jim

[Ninagram in reply to Cll4me2]

thanks Jim should start soon

[LynnB1947]

1908?? I hope your treatment brings you another W&W period that long. Best wishes!

[esplanade]

From Vancouver, BC. I just started Ibrutinib 5 days ago. So far very few side effects and my neck lymph nodes seem to be shrinking.

Does anyone else have information/experience re Ibrutinib? Thank you.

[Ninagram]

Thanks for sharing I hope you will do well. Will keep you posted on my progress

[Barbshow]

Hi Ninagram. I'm wondering which trial it is that you're considering and at which site. My husband is close to needing initial treatment and I saw a similar trial at MDAnderson. Also wonder what is leading you to consider the combination rather than starting with ibrutinib monotherapy.

Thanks for sharing and I wish you good health!

[Ninagram in reply to Barbshow]

What my hematologist thinks is best for me. He has had good results

[patclune]

Currently on trial at MD Anderson with the same combination. Went to Anderson in August 2016 for second opinion and got a chance to be included in trial - NCT02756897. Started ibrutinib in Oct 2016 added Venetoclax in Feb of this year. Fantastic results! Awaiting bone marrow results from last visit (Aug 4) but everything is wonderful. Very little side effects, mainly from Ibrutinib. Acts as a blood thinner with resulting problems. NO BIG DEAL. Lots of sticks and bone marrow draws, but it's way better, for me, than iv chemo. MD Anderson is a wonderful place - really well organized, thoughtful, and great customer service attitude in all areas.

Good luck!

[Barbshow in reply to patclune]

So glad to hear it's worked so well for you and that Anderson has been a good place for treatment! We wish you continued good health.

[Ninagram]

Thanks and glad to hear you are doing well. I just found out I did' this get accepted to the study as I had a melanoma 2.5 years ago and you need to be 3 years. I am still positive. I am being treated at Levine Ca center in Charlotte NC. Good luck