Wednesday, December 7, 2016

ASH 2016 with Patient Power

Just back from ASH 2016.  Plenty of interesting things to discuss.  I did a sit down visit with Andrew Schorr of PatientPower where we filmed this 45 minute discussion of relevant topics in CLL.  We were joined by some great docs from MD Anderson and Cambridge Hospital in England.

I am dismayed about my inability to get much blogging done recently.  The good news is that the research side of my career has been soaking up all my free time, but it has left me little time for the blog posts which take me several hours each.

I have a few things I hope to put up if I can get around to it, but thought this video might be useful to folks.  We talk about the role of molecular testing, treatment goals, ibrutinib dosing and other relevant new findings.  I hope you enjoy the video.

As always, you can leave a comment by clicking on the post title and then scrolling to the bottom.  Thanks for watching


  1. thank you for taking to time to post this video. I am newly diagnosed early stage CLL - it was a dreadful experience and I was told little by consultant whose only response was" i cant deal with this today I have a full clinic". I have found out so much from your video and now feel empowered to face my disease.

  2. Excellent discussion and certainly clarified a few points for me.
    Thanks for the opportunity to view and listen

  3. I really appreciate all you do for the CLL community Dr. Sharman and I will echo the comments of others who have mentioned how much you have helped them deal with the stress of this disease. You can be counted on to provide an informed, up to date and honest perspective on issues that are so important to so many of us. Thank you very much.

  4. Great video guys! Thanks for your commitment to us. I was diagnosed with SLL in 2013. Started with Rituxan & Revlimid in Jan 2014 & switched to Ibrutinib in April 2014. Continuing to do well after 2-1/2 yrs on IBR. As Andrew said, "God speed to you in your research." LongTallTexan

  5. As always, your knowledge, experience, and ability to share ideas with clarity is appreciated.

    Your comment about negative overall effects for those who stop Ibrutinib for 8 days or more is disconcerting. I'm wondering what that mean for those of us who are told to stop Ibrutinib for 3-7 days prior to and following surgery? And what does it mean that cessation of Ibrutinib causes negative outcome? That the drug stops working for that patient, or maybe that patient doesn't have a chance of reaching MRD in the long haul?

    As I prepare for cataract surgery, I am told to stop Ibrutinib for 3 days before and after. Since the eyes are done separately, anywhere from 1 to 4 weeks apart, that means two close together cessation periods of a week each. Due to Ibrutinib, I'm guessing it will take my first eye longer to heal than the usual week. If that is true, and given my doctor's schedule, I'm anticipating a 4 week interval between the surgeries.

    This leads to the quandary of whether it would be better to stop Ibrutinib once for 14 days, should the first eye be sufficiently healed to do the second eye a week later, or whether it would be better to have two 7-day cessations a few weeks apart.

    Yes, Ibrutinib is great in melting nodes away and improving labs and energy. The bleeding risk adds to questions about managing life. A bruise from a stick hitting my upper calf while gardening 10 weeks ago, which formed a hematoma and spider web bleed down my leg, is still not completely healed, so I know healing is slow.

    I look forward to your continued gathering and dissemination of information about the various CLL treatments, their success value relative to a patient's DNA, and potential outcomes.

    Thank you for your passion and diligence!

  6. Very many thanks for this - so clear and informative. Very good timing for me as I try to make a decision about retreatment.
    Thanks to everyone involved.


  7. Newly diagnosed with CLL, I found your presentation both informative and encouraging. Thank you for sharing!

  8. Really appreciate the post. I've been following you for 5+ years. Will soon enter the Dana Farber combination trial on ibruntinib plus obinituzimab, hoping to advance knowledge.

  9. I just viewed your Patient Power Video regarding Poor outcomes with any Ibrutinib interruption. I've been taking Ibrutinib for 3 years with excellent results. I was recently diagnosed with prostate cancer and I'm starting radiation therapy in a week. The treatment is once daily for eight weeks. I was told to stop taking Ibrutinib during the radiation treatments. The explanation was, "because of the volume of blood circulation in the area of the prostate CLL cells would be radiated". However, after watching your Patient Power video regarding poor outcomes with Ibrutinib interruption I'm concerned about stopping Ibrutinib for 2 months. Your thoughts please. Thanks David Tipton

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