Part 2 of ASH Interview with Dr. Sharman, a patient meeting in Seattle and off to iwCLL later tonight

[bkoffman]

Friends,

This week on the CLL Society website, in our Conference coverage section, we share the second part of an interview from ASH 2014 with Dr. Jeff Sharman with a discussion of the life and death pressures on our B cells and how that relates to ABT-199. We also cover the latest research on idelalisib and rituximab, and what research in general is still needed.

I'm heading off to the International Workshop on CLL in Sydney, Australia today and will be attending sessions and doing interviews while I'm there. I'll be posting new information upon my return. Stay tuned. We are also co-sponsoring a small patient meeting with Lymphoma Australia.

Also, we will be sending out our inaugural newsletter, the CLL Tribune at the end of September. Don't miss this special collection of research news, basic CLL information, fun facts and a wealth of wisdom and shared experiences from our fellow patients. If you are receiving this information through a CLL Society Alert email, you are already signed up to receive it. If you are reading this through another source, sign up to receive it here: cllsociety.org/newsletter-s....

For those of you in the Seattle area, we just became aware of a patient meeting that will be held on Saturday, September 26, 2015 starting at 9:30 AM at the Sheraton Seattle Hotel. Two CLL patients will be sharing their personal stories, and Dr. John Pagel from the Swedish Hospital will be providing a talk on the basics of CLL. You can call 844-482-6815 to register. Complimentary breakfast and parking are provided and you are welcome to bring a guest. You can view the flyer for the event here: cllsociety.org/wp-content/u... .

Stay strong.

We are all this together

Brian Koffman

Volunteer Medical Director of the CLL Society

cllsociety.org

bkoffman.blogspot.com

[PaulaS Volunteer]

Thanks Brian. This is very interesting - though I'm struggling to understand it all. Is Dr Sharman saying that although Ibrutinib and Idelalisib cause CLL cells to leave the nodes and spleen, they don't necessarily die when they're in the peripheral blood? They may just recouperate, then return to nodes and spleen? Maybe I misunderstood what Dr Sharman said, but that was a big surprise to me.

I started Idelalisib just over 2 weeks ago. In the first week, my VERY enlarged spleen shrank dramatically (making me feel MUCH better). In the second week, the spleen didn't continue to shrink much (it's still about 7 cm below the intercostal margin). I still feel well so I'm not complaining, but I'm wondering if some of the CLL cells pushed out of my spleen have gone back in, stopping it shrinking any further...

Hope you enjoy Australia,

Paula (in Sheffield, UK)

[bkoffman CLL CURE Hero in reply to PaulaS]

Usually the effects of idelalisib slows down after a dramatic first few weeks of node and spleen shrinkage. CLL cells leave the protective environs of the nodes, BM, and spleen where they eventually die of loneliness in the blood stream.

Stay strong

Brian ( just back from Australia)

[PaulaS Volunteer in reply to bkoffman]

Thanks Brian. But I'm still wondering if I heard Jeff Sharman correctly, when he seemed to say that after leaving the spleen and lymph nodes to circulate in the blood stream, some CLL cells don't die of loneliness - they have a rest then go back to the the spleen and nodes where they start growing/multiplying again...

The relevant part of your interview with Jeff Sharman is from about 3:55 minutes, to 5:44.

cllsociety.org/2015/08/ash-...

That's rather disconcerting... but I might have completely misunderstood.

After one week of Idelalisib monotherapy, my lymphocyte count jumped up from about 260 (thousand) to 473 (thousand). I was expecting something like that, but now, three weeks later, the ALC is still 467. So, I don't think many of those cells have died of loneliness yet. I'm hoping they're not just having a holiday and are planning to pop back into my spleen again (where I suspect most of them came from).

I realise you cannot comment on individual cases, but my question is more general, about the behaviour and lifespan of CLL cells that have been squeezed out into the bloodstream...

Best wishes,

Paula

[bkoffman CLL CURE Hero]

The rise in he count tends to fall back much more slowly with idelalisib than with ibrutinib.

[PaulaS Volunteer in reply to bkoffman]

Thanks, that's interesting. I didn't realise that. I'm happy for it to drop slowly... Would that mean less risk of tumour lysis syndrome or kidney problems?

[bkoffman CLL CURE Hero]

Less but not zero. TLS usually occurs at the ignition of therapy when there is a kill in the nodes.