Dr. Neil Kay: CLL Society Webinar, Just Diagno... - CLL Support

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Dr. Neil Kay: CLL Society Webinar, Just Diagnosed: What Do I Need to Know?

bkoffmanCLL CURE Hero


Please join us for a CLL Society Webinar, Just Diagnosed: What Do I Need to Know? on Tuesday, April 28, 2020 at 10 AM PT / 11 AM MT/ 12 PM CT/ 1 PM ET. Find out everything you need to know, from A – Z from Dr. Neil Kay of the Mayo Clinic for those newly diagnosed with CLL, including what to watch out for, the prognostic testing you need, and how to stay healthy. Please see additional information and register here: cllsociety.org/cll-society-....

Long after Covid-19 is gone, we will still have to deal with our CLL. Dr. Kay is a great teacher and the man to ask about green tea extracts.

Stay strong.

We are all in this together.


Brian Koffman MDCM (retired) MS Ed

Co-Founder, Executive VP and Chief Medical Officer

CLL Society, Inc


10 Replies

Thank you so much 🙏🏻

My questions would be (not that I expect them to be answered today):

1. Why do some of us have symptoms and others do not? (Is one further along if one has an enlarged & uncomfortable spleen and lumps in one’s neck or could one go on for many years like that without any problems?)

2. Why does one get a sore spleen and what can we do about it while on W&W (besides spleen removal which I would never wish to do)?

3. How do we live with these issues (especially uncomfortable and enlarged spleen) or is it okay to simply accept and not worry too much?

4. Why did my haematologist advise me to remove all stress from my life & exercise (together with: avoid infections)?

5. What can we do to avoid treatment for as long as possible?

Much appreciated!

bkoffmanCLL CURE Hero in reply to MyRoc

Sorry we didn't get to all the questions. Not worrying is good.

bkoffmanCLL CURE Hero in reply to MyRoc


I'll do my best.

1. Disease is different in everyone.

2: When the nodes shrink with therapy or time or luck, the spleen usually does too. BTW, I had my spleen removed 14 years ago and am okay.

3: We all cope differently, but we have great treatments to need to suffer if really uncomfortable.

4: Impossible request, but too much stress makes everything worse. Has to do with the chemicals released

5: Stay fit, eat well, love well, and be lucky.

Brian CLLSociety.org

The webinar was so worthwhile and a MUST for newly diagnosed CLLers. Thank you again :)

bkoffmanCLL CURE Hero in reply to MyRoc


Is there a way to watch this? I struggle to find time during the day so I am missing out on a lot of things I would love to watch. Thank you.

MyRoc in reply to Poodle2

Hi Poodle, The CLL Society sent a link today cllsociety.org/2020/04/cll-...

bkoffmanCLL CURE Hero

It will be posted on the website within a week. Please sing up for our weekly Alerts if you haven't already as it will provide the direct link. Stay strong. Brian

Hi Brian how are you doing after stopping inbrutinib?

bkoffmanCLL CURE Hero

Doing well, though I am way overdue for my lab work due to C-19.

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