CLL Society Tribune!

[lankisterguy]

Welcome to the Second 2019 Issue of The CLL Society Tribune.

cllsociety.org/quarter-2-20...

Dear Friends and Supporters of the CLL Society.

Welcome to the growing and evolving Q2 2019 Edition of the CLL Society Tribune!

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A warm welcoming note from Janet Morrison will let you know that this publication, which seeks to enrich our understanding and help us to connect more deeply with our community, is now a place for contributions from the arts! This month we feature a painting by patient Christina Fisher and a poem by caregiver Nancy Salwin. Please feel free to send in your own creative work.

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Also debuting this month is a column by Dr. Ed Ratner on end of life and palliative care. Please feel free to send in your questions for Dr. Ratner.

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Patient-journey stories are generously shared by Joel Roisman and Chris Mantei.

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Dr. Susan Leclair will, in her playful way, teach us what we need to know about red blood cell testing.

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In Dr. Panagiotis Baliakas' article, we learn that "complex karyotype" as a prognostic factor may be more complex than we think.

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Of particular importance is this issue's interview with Dr. Tait Shanafelt from ASH 2018 in which he explains the research proving once and for all the superiority of ibrutinib-based therapy over FCR.

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Check out the results of our recent survey on Shared Decision-Making, then lend your input to our new survey on End of Life and Palliative Care.

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CLL Expert Dr. Rick Furman, Pharmacist Tom Henry, Laboratory Scientist Susan Leclair, and Hospice Dr. Ed Ratner tackle your questions.

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Hope this keeps you on your toes.

Happy summer!

And stay strong, everyone... we are all in this together.

Patty Koffman

If you or a loved one has been helped by the CLL Society, consider making a donation.

The CLL Tribune is our place for the latest news from medical conferences, a chance to get answers to questions from our pharmacist, lab scientist, or doctor, our Did You Know feature, articles on The Basics and Beyond the Basics about CLL, and most importantly, the stories of our fellow patients and caregivers. These are so valuable.

[READ MORE & get the links for each of the articles mentioned below]

cllsociety.org/quarter-2-20...

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LIVING WELL WITH CLL

Wish me Ill? Beginning CAR-T Therapy

Chris Mantei, CLL patient, describes her journey after receiving the news that she has CLL.

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CLL Set Me Free

Christina Fisher, CLL patient, shares her painting describing what it's like to "appear normal on the outside but live with the thoughts of CLL daily."

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My Journey With CLL

Joel Roisman, CLL patient,provides valuable advice in seeking out a CLL expert and joining a support group.

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THE BASICS

BEYOND THE BASICS

Red Cell Explanation

Susan Leclair opens the lab and provides a comprehensive look at red blood cells.

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Complex Karyotype in CLL

Lead author Dr. Panagiotis Baliakas explains the ERIC research study.

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Website

: cllsociety.org/

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Len

[cajunjeff]

Thanks for posting this Len. My favorite part of the CLL Tribune is the question/answer session with Dr Furman. He always gives direct and understandable answers to questions with the good and the bad. He is optimistic about the future, but doesn’t sugar coat his answers.

The good I got from him: He appears to think ibrutinib could be a drug that never stops working for a substantial percentage of first time users. It might be the only treatment some people ever need.

The not so good: Cll compromises our immune systems and treatment doesn’t restore them, but for some evidence ibrutinib has some positive impact with our t-cells.

The unknown: What is our life expectancy with Cll now? He answers that no one really knows, all that can be said now is that the future is brighter with the new drugs which are clearly extending our life expectancies.

My take: With the new drugs that can control our Cll, how long we live for most of us is a function of how well we take care of ourselves. I am no doctor, but I can figure out that if you compare a large group of people with compromised immune systems vs a group without, the group without, on average, will live longer.

But that’s just an average. We can compensate for our weakened immune system by adopting a healthy lifestyle and by being proactive with medical screening, proper vaccines, flu shots, etc. And then there is modern medicine with boosters like ivig if we need it.

I continue to think many of us can live just as long as our friend without Cll, we just have to be smarter and use Cll as a wake up call to eat better, exercise more, adopt a positive attitude (yes it’s proven, people with a positive outlook live longer), and be proactive with our medical screenings.

Whoops, I sure did wander with that one. Sometimes it helps for me to write this out for myself. I think I just talked myself into getting a workout and a fruit and cheese lunch. It’s Saturday, I might even wash it down with a cool brew.