This week I'm posting an interview that I had with Dr. Anthony Mato from U Penn when we talked at ASH 2016 about the real-world research he has been doing patients being treated with ibrutinib both in the community and academic settings, and not just within clinical trials. You can view my summary, watch the interview or read the transcript here: cllsociety.org/2017/05/ash-....
The data suggests that in the community it is intolerance and side effects that is the most common reason for stopping a signal blocker such as ibrutinib. Disease progression is a distant second.
This is important because these drugs are game changing and finding ways to maximize their benefit is critical.
This is very interesting to me Brian so thanks. When last talking to my haematologist (not necessarily a CLL specialist), he told me that ibrutinib was a 'clean drug' with very few side effects. Daily we hear of so many side effects and I think it may be that in the U.K., he hasn't been exposed to a large enough sample group.
These have developed in the last 4 -6 months after a glorious first 18 months of really good health on Ibrutinib. None of these dreary side effects will kill you but they certainly diminish quality of life. Incidentally my IGG levels are fine as are my other bloods, so I guess the numerous infections can only be down to Ibrutinib.
Sorry to hear of all your infections. Respiratory and urinary tract infections are too common in all of us with CLL.. The data actually suggests fewer infections in the 2nd year of ibrutinib than in the first, but obviously there are widely different experiences such as yours. Hope things straighten out soon.
Great video Doc. Also, I was happy to donate a few bucks to the CLL Society web site. You have been such an inspiration to me in this miserable journey. You offer knowledge and hope.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
