So I stopped the Ibrutinib for a week because of severe and debilitating pains, after 2 or 3 days felt much better. No pain.
Furthermore my blood results were much better, the WBC down to to 44 from 204, (peaked at 300 in December) which is because the Ibrutinib was no longer evicting the cancer cells from lymph nodes (and marrow?) into my bloodstream. After a week we decided to start again on lowest dose (1 tablet instead of 3) - and so far fingers crossed- I have been fine.
Is anyone else on the FLAIR trial adjusting their dosage?
The intention now would be to increase dosage to 2 tablets. I would be willing to try 3 again but imagine that the pains would return.