Friends,
A short simple interview: ASCO 2014: Dr. Byrd: Ibrutinib in the Real World on the practicalities of taking ibrutinib outside of a clinical trial. It's on my blog at bkoffman.blogspot.com
More to come from ASH soon.
Happy Thanksgiving to all my American friends
Brian
My Mum's specialist has managed to get hold of this direct from the manufacturer as it is not yet lisence for use in the UK.
He wanted to get hold of it as my Mum is a rare case, she has CLL and Pure red cell aplasia.
Brian, Thanks for this interesting link. I am 1 month into Ibrutinib, as a sole agent, under the named patient scheme in the UK - which closed recently. Within 2 weeks my WBC had fallen from 165 to 31.3 (normal = 4.5-11) and my lymphocyte count from 152 (not high but had increased very rapidly) to 27.8 (normal = 1- 4.8). By week 4 both counts have fallen again, but not so dramatically. I've had no side effects and it seems to be working well. I'm the first to have this drug at my local hospital but my consultant seems very clued about about trials and what's in the pipeline and is delighted with these results.
The paperwork I received for Ibrutinib ruled out pomegranite and seville oranges. I note Dr Byrd ruled out grapefruit. Does this mean all citrus fruit? I imagine it does. My paperwork also said no to fish oil - I had been taking Krill Oil capsules prior to Ibrutinib. My diet is predominantly vegetarian, but I eat fish c. 2x/wk - frozen wild Alaskan salmon (never farmed) and mackerel (caught locally). I also take some plant-based supplements e.g. Immiflex (inc. Vit D3) for my immune system and Alkala N for a balanced acid/alkaline ratio. I'd welcome any further comments on what not to consume!
I feel so lucky to have had this chance with Ibrutinib as I hadn't many options left! Good wishes to all who are coping with CLL.
There are several fruits, but not all citrus, that increase the blood level of ibrutinib (and many other drugs) through inhibition of the cytochrome P450 3A4 isoenzymes (3A4). Here is one partial list that I found: ganfyd.org/index.php?title=... . Fish is good. Alkaline is good. Not so sure what's in Immiflex. The fish oil may be a concern as it affects the platelet adhesion and there is a bruising problem with ibr and perhaps some bleeding risk. I take flax seed oil daily and have never been advised otherwise.
Be well
Brian
Here is a fairly complete listing of drugs which may interact with Imbruvica (ibrutinib) ... worth bookmarking
Brian, many thanks for this link - it looks very useful, as is your comment on fish oil flax seed oil. The ingredients of Immiflex are: Yeast (Saccharoyces) Beta-Glucans, inulin, Hydroxypropyl Methyl Cellulose (capsule shell), Rice Bran Extract, Vitamin D prep [sucrose, corn starch, gum arabic, median-chain triglycerides, tricalcium phosphate, Vitamin D3 (cholecalciferol, antioxidant: dl-alpha tocpherol]. It has been prescribed for me for some years by a medically qualified integrated medical practitioner but it also available online. Best wishes.
I personally like beta-glucans and Vit. D3, but you need to run any supplements by your providers and I am not recommending either for anyone. Beta-glucans are very complicated. If they do indeed enhance immunity, depending on their mechanism of action, there is the real concern and some evidence suggesting that auto-immune problems could emerge and they might even stimulate our B cells. Vit. D3 has it proponents and naysayers too. It's tricky when dealing with our cancer of the immune system. When in the course of the disease one takes these supplements and our individual flavor of CLL is probably also important. So many moving parts and so many unknowns.
I am glad to hear that Ibrutinib is working for you. My doctor told me not to eat grapefruit and seville oranges. I have continued to drink orange juice lemonade and I also eat fish and have not had any complications. I pray you continue to do well and thank you for the good wishes.
Thanks. I live in Socal but my kids are in Alameda.
Ibrutinib and Cll 
Cll n Ibrutinib
CLL , Lyme and Ibrutinib 
