ASH 2016: Dr. Mato on real world data on ibrut... - CLL Support

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

bkoffman profile image
bkoffmanCLL CURE Hero
7 Replies

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

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bkoffman
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Newdawn profile image
NewdawnAdministrator

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

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply toNewdawn

OMG... clean drug?

Here is Dr. Hillmen's study

learningcenter.ehaweb.org/e...

bkoffman profile image
bkoffmanCLL CURE Hero in reply toCllcanada

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

splashsplash profile image
splashsplash in reply tobkoffman

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.

bkoffman profile image
bkoffmanCLL CURE Hero

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.

Justasheet1 profile image
Justasheet1

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

bkoffman profile image
bkoffmanCLL CURE Hero in reply toJustasheet1

Thanks so much.

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