CLL Support Association
9,226 members14,594 posts

ASH 2016: Dr. Mato on real world data on ibrutinib

Hi,

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.

Stay strong.

We are all in this together.

Brian

cllsociety.org

bkoffman.blogspot.com

7 Replies
oldestnewest

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.

Gratefully,

Newdawn

1 like
Reply

OMG... clean drug?

Here is Dr. Hillmen's study

learningcenter.ehaweb.org/e...

1 like
Reply

Hillmen's data is quite different and so is its source. Both are important pieces of information. Thanks for adding this perspective.

Reply

Brian, I would like to add to the list of Ibrutinib on-going side effects:

Upper respiratory infections, sinus infections, urine infections

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.

1 like
Reply

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.

Reply

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.

Thank you for all you do.

Jeff

Reply

Thanks so much.

Reply

You may also like...