Does anyone know what factors influence time-to-resistance for developing a resistance to Ibrutinib? Foe example, does having del17p and TP53 make a difference? Does having an unmutated IgVH make any difference? Does having a secondary bone cancer change things? I know Ibrutinib is fairly new drug but surely professionals are asking - and answering - these kinds of questions for themselves as well as their patients. Please don't respond if all you are able to say is "It's different for everyone, ask your "team"". I don't have a team and my doc is not a CLL specialist, only a general haemato-oncologist specialist. He cannot be expected to know everything about everything - it is so very complex. I feel I have a sword of Damocles hanging over me and I'm just waiting for my lymph nodes to enlarge again. My life is completely on hold (no purchases, no holidays, no savings etc) cause I might not be here or I might be wasting precious resources needed for myself or someone I love. The USA is so much better at this than we are but I cannot contact them to ask them questions. The NHS website is utterly pointless as they just refer you to your doc. I've bought myself a babies pacifier to use when a health professional tells me "Don't worry about it" again...lol!!!!
Hi Crowmania, I thought I would drop in past and put up a reply to one of your posts 
I am Mike Thehighlander and I help out around our blood cancer groups but as you will understand it would take a genius to be able to reply to every post that comes up as blood cancers can be so complicated and diverse.
I have a rather rare Skin Non Hodgkin’s Lymphoma with only about 400 diagnosed a year in the UK (see my profile) so yes it is very unusual for Consultants to have seen it let alone treated it.
I do understand your frustration with regards to the word ‘team’ as not everyone get treatment at a unit that has a ‘team’ so you end up having to be your own advocate at times.
Although I do take my hat off to both my Haematologist and Dermatologist as they did put my case out far and wide to get reviewed by consultants who had experience in treating my condition and so far so good although it has been a challenging 22 years.
I don’t know if you have looked at Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma Zoom support groups and indeed a great Lymphoma Buddy Service.
Always around to listen but may not be much help with answers
