Traveling Blues related to CLL (chronic lymphocytic leukemia)

Stairs to the beach at Torrey Pines State Nature Reserve

February may be an extra day longer this year, but that still doesn't justify my travel schedule.

I was in Charlotte, Tampa, and Atlanta this month to speak to patients and caregivers about the importance of a CLL support group. The meetings were successful beyond our highest expectations, and if the cards and the support line up, and I expect they will, we soon will be starting CLL specific support and education groups on the east coast with strong  local enthusiasm and support.

When I am on the plane, I wear my N95 mask and using prodigious amounts of hand sanitizer to preserve my health.

I was in cold and snowy Columbus at Ohio State for my CLL clinical trial (more on that in a later post). It is not easy to leave warm and sunny Socal for the snow.

I was in Dallas for just a few hours at the airport to meet others to discuss the changing nature of medical education for family doctors.

And I drove to San Diego twice. The first time was for a wonderful meeting with a fellow CLL patient who is doing important and worthy work to educate and counsel those fighting a major illness or dealign with a serious life event (much more on that later too).

The second trip (that gave us time to hike at the beautiful Torrey Pines State Nature Reserve on the way down) was to attend the two day international CLL Research Consortium (CRC) meeting with folks such as Drs. Kanti Rai and Bill Wierda and Neil Kay and Tom Kipps and John Gribben and Matt Davids and Mike Choi and Cathy Wu and Jeff Jones and Januario Castro and Jennifer Brown and Carlo Croce and Nick Chiorazzi and Philip Thompson and Jackie Barrientos and many many others. What a privilege to be there and to hear their ideas on new research directions and to be able to insert a patient's perspective.

Many of the trips saw me flying across the country for only a few hours before scurrying home.

All this time in planes and cars is crazy and unhealthy and expensive and inconvenient, and very very tiring, but I do it because when there are these opportunities to make an impact or learn something or forge a new alliance, if I can go, I will try to be there.

March sees me in Denver and Dallas, back to San Diego again to see Dr. Kipps, and a quick trip to the beach.

I will be speaking at the LLS Blood Cancer Conference in Anaheim on March 19. This is a great conference for patients and caregivers. Tanya Siddiqi from the City of Hope will be talking about CLL. Those who heard her at our City of Hope CLL Patient Forum in December know what a great  speaker she is and how deeply she understands CLL. Try to attend if you are in the area.

The CLL Society will again have a table there so please say hello. Last year's LLS Blood Cancer meeting was our "coming out party", and this year we get to brag about all that we have accomplished in our first year and our plans for 2106 as a non-profit.

Yes, it has been and will continue to be crazy with seven trips out of town in the month (and one I didn't include on January 27), but today, I have nothing except for some phone calls that I must do on my schedule.

I plan to enjoy my down time listening to the Beatles and some be-bop and then going for a long walk.

Sunset at Torrey Pines on our way to San Diego

Patient Advocacy in Clinical Trials in CLL (chronic lymphocytic leukemia)

Friends,

Today on the CLL Society website, we share an interview with Laura Cleveland, a CLL patient whom I interviewed at the CLL Society and Leukemia and Lymphoma Society sponsored patient dinner held the night before the CRC (CLL Research Consortium) patient forum in San Diego in April 2015. We discussed the role of patient advocacy in clinical trials for CLL. Please take a look here to see the interview.

 

Although it is 5 weeks away, we're busy filling our schedule with meetings with other CLL and Lymphoma organizations, reviewing abstracts and scheduling interviews at the American Society of Hematology Annual Meeting in Orlando. Simultaneously, we are putting together the next issue of The CLL Tribune, due out after ASH. If you haven't had a chance to peruse the first issue, you can access it here.

 

If you have questions you like addressed in future newsletters, OR would be willing to answer 5 questions in our Reader Poll about the CLL Society website, OR would be interested in writing an article for future newsletters, please go to the Ask & Tell section. Our goal is to fulfill the unmet needs of the CLL community, so we always welcome your feedback and questions.

 

SAVE THE DATE: If you live in the Los Angeles area, please consider attending a post-ASH patient education forum and CLL Society LA support group launch in conjunction with City of Hope scheduled for Saturday, Dec. 12, 2015. A flyer with more details will be posted in the next week or 2.

 

Finally, if you are receiving this email through a CLL Society Alert, you are all set. If you are receiving this through another method and haven't already, please sign up here. Also, please forward this email to a fellow patient or caregiver who might benefit from knowing more about CLL.

 

Another reason to make sure all the folks that might be helped sign on is that we will be posting a backlog of great lectures and interviews and articles on CLL over the next few months leading up to ASH and this alert is your best friend in knowing what new material we have posted.

 

Stay strong.

We are all this together

Brian Koffman

Volunteer Medical Director of the CLL Society

http://cllsociety.org

http://bkoffman.blogspot.com

Dr. Byrd on trial design and getting drugs to market for CLL ( chronic lymphocytic leukemia)

This week on the CLL Society website, we share an interview with my trial doctor, Dr. John Byrd out of Ohio State University, discussing how CLL drugs get to market and what the implications are for patients in terms of clinical trial design, especially in phase 1 trials for chronic lymphocytic leukemia.

We met at the CRC (CLL Research Consortium) Scientific Meeting in San Diego in April 2015. The CLL Society also co-sponsored a patent forum the day before the science meeting began.

There are several take-aways from my interview, however one that is critical is that we be well-informed, not just about the drugs we might be taking, but also of the details of the clinical trial design itself.

Please take a look at cllsociety.org/2015/09/crc-... to see the interview and important related links.

The CLL Society’s inaugural newsletter will be emailed out midweek and we are really excited about it: Dr. Byrd is has written a long Q+A on ibrutinib; Dr. Jennifer Brown gives practical advice on idelalisib; I cover the basics of just what is CLL/SLL and more in a monolog and transcription; plus several patients including WWW have written diverse and helpful articles. If you are interested, please sign up at cllsociety.org/newsletter-s... .

Another reason to sign up is that we will posting a backlog of great lectures and interviews and articles on CLL from CRC and my time at iwCLL over the next few months leading up to ASH and getting the alert is your best friend in knowing what new material we have posted. As always all our content is free and doesn’t demand any of of your information to be seen.

Save the date: We are planning a post-ASH patient education forum and CLL Society LA support group launch in conjunction with City of Hope on Dec. 12, 2015. More details to follow.

Exciting times, but us patients still have to keep encouraging on the researchers. We aren’t to cure yet. We need to keep pushing.

Stay strong.

We are all in this together.

Brian

TITLE: CRC 2015: Dr. Neil Kay on Prognostic Indicators and Standard Early Care for CLL

This week’s new post on the CLL Society’s website brings us practical advice from Dr. Neil Kay out of  Mayo clinic on  prognostic indicators and how to manage early stage CLL. He also  discusses MBL or monoclonal B cell lymphocytosis a precursor to CLL.

Dr. Kay’s lecture and my commentary from the robust but accessible CLL Research Consortium (CRC) Patient Empowerment and Education Conference in April 2015 in San Diego at UCSD can be found under conference coverage here.

If you haven’t already seen Dr. Kipps’ incredible overview of CLL and the work the CRC does, please catch it here.

Brian Koffman (flying home after two weeks in Poland)

Volunteer Medical Director CLL Society