Friday, December 30, 2016

Good News on my CLL (chronic lymphocytic leukemia) to close out the year



ZENDO
More good news as the year draws to a close. 

I recently received my flow cytometry tests from Dr. Byrd done at Ohio State earlier in the month. I already knew that my absolute lymphocyte count (ALC) had dipped a little which is good news, but it is really the actually count of the cancer cells that matters when our numbers are normal as in my case. If they are high, then it is simple, most of the ALC will be made up by the malignant CLL cells.

When the numbers are low or normal (which is a good thing), only an expensive flow cytometry test that fingerprints the surface markers of my lymphocytes will reveal the details of the cancer's growth or retreat.

My clone of cancerous B cells that had been climbing at a very slow rate for about 3 years, but had recently sped up and tripled in the 90 days prior to the testing done 3 months ago at my prior visit to Columbus on Sept. 26, 2016, has now dropped a bit in the last 90 days. 

This is only the second time in the last three year that the growth of my cancer has taken a break or preferably a brake, and I am sure happy about that. It is the best possible news for the end of the year.

I am still waiting on more details and more testing, but this is reason enough to celebrate. 

I will likely do that by spending new year's eve at the Rinzai-ji Zen Center where instead of bubbly I will mediating and drinking tea. 

In silence.

Meditation is a much higher high, though I do admit the occasional flute of good champagne is pretty special.


Happy New Year to All
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Thursday, December 29, 2016

The CLL Tribune: Useful articles on chronic lymphocytic leukemia by patients, caregivers. and doctors

I am so proud of and thankful to the patients, caregivers and doctors who wrote for The CLL Tribune: A Quarterly Publication of the CLL Society on chronic lymphocytic leukemia.

It is full of good stuff for those at any level of their disease.

As we close out another holiday season, we reflect upon the good times with family and friends, and remember all that has been accomplished in the world of CLL in 2016.

The CLL Society continues to provide education and resources to fill the unmet needs of CLL patients and caregivers. The Society also started a number of in-person patient support groups around the country where patients help patients understand their CLL and cope with a cancer diagnosis. And, most importantly in 2016, the dedicated researchers brought us new therapies in clinical trials and FDA-approved novel biologics to treat CLL.

Now we look forward to the promise of more and better treatments to come in 2017. As CLL patients, we must stay vigilant, educated, and strong. And, with more people being diagnosed with CLL every day, we must continue to help them along their CLL journey.

If you can support our mission with an end of the year tax-deductible donation, be assured it will be used to help more patients and caregivers and allow us to offer more services. We wish you and your families a healthy and Happy New Year. Stay strong. We are all in this together.

Here are some of the articles:

Watch and Wait: Professor Chris Fegan from Wales "GETS" CLL
Dr. Brian Koffman and Dr. Chris Fegan discuss discussed the stress of being diagnosed with leukemia in general and in particular, dealing with "Watch and Wait".

Ibrutinib For Watch and Wait? My Story
Meldon Kahan, a CLL patient, shares his decision to join a clinical trial testing ibrutinib in treatment-naïve patients who are still in the watch and wait phase.

What to Do While You Watch and Wait: A Patient's Perspective
Mark Hoffman, a CLL Patient, shares how he manages watch and wait and what works for him: education, diet and exercise, green tea and turmeric.

What You Should Know as a CLL Caregiver
Howard Massey, a caregiver for a CLL patient for the past 10 years shares some key elements to being a good caregiver.

You Never Know: Twenty Years since Stage IV and Counting
Dennis Fried, CLL patient, uses his great sense of humor to describe how he dealt with his initial diagnosis of Stage 4 CLL and the challenges he has faced since that time.

Autoimmune Problems in CLL
Dr. Brian Koffman reviews the fundamentals of autoimmune disease that can cause low blood counts or cytopenias in CLL patients, potential causes and how it is treated .

Richter Syndrome
Dr. Adrian Wiestner from the National Institutes of Health in Bethesda, MD explains what Richter Syndrome is and the available data about this rare condition when CLL/SLL transforms into an aggressive lymphoma.

ASK THE DOCTOR
Dr. Richard Furman of Weill-Cornell Medical College answers readers' questions submitted to the CLL Society

CONFERENCE COVERAGE
ASH 2016: An Interview with Dr. John Pagel on Maintenance Therapy in CLL
Read or watch the interview with Dr. Pagel from ASH 2016 where he shares key data presented on the topic of maintenance therapy in CLL.

DID YOU KNOW?
Learn some key facts and data points about CLL

ASK & TELL

View the CLL Society ASH Poster based on an earlier Reader Poll, Participate in a new 5-question reader poll about testing before treatment, or submit a question you'd like addressed in future newsletters.

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Tuesday, December 13, 2016

City of Hope Patient Forum this Saturday and IVIG and immunoglobulins in CLL (chronic lymphocytic leukemia)


Dr. Ben Kennedy

On Saturday, December 17th, we’ll be at the 2nd Annual Post-ASH CLL Patient Forum at City of Hope Medical Center in Duarte, CA. If you can make it, we’d love to see you there. You can access the flyer below and pre-registration is requested. We look forward to seeing you there!

Flyer: 


Pre-registration: 


Today we are posting an audio interview (and accompanying transcript) with Dr. Ben Kennedy who I spoke with during the 2016 CLL Horizons meeting in Belgrade Serbia a few weeks ago. We talked about how CLL affects our immune systems in addition to being a blood cancer. 
You can access that interview here.  


The next issue of The CLL Tribune will be coming out the week after Christmas. We’re busy editing, and doing the layout and putting on all the finishing touches. We’ll also be sharing the poster from ASH that many of you contributed to in our Q1 2016 Reader Poll. Stay tuned!

Newly-Forming CLL-Specific Support Groups

We are organizing some CLL-specific support groups in a variety of cities. Some of you may have attended a CLL educational meeting in that area, or just be interested in joining a support group. Click on the City to sign up and tell us about your preferences as we work to get them started. We appreciate those who expressed interest and have already completed the survey.


In the meantime….
Stay strong.
We are all in this together.
Brian Koffman, MD

12/12/16

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Monday, December 12, 2016

Jikan Leonard Cohen Memorial Service


We are home from a wonderful memorial service for Jikan Leonard Cohen at the Rinzai-ji Zen Center.

Though Leonard and I belonged to the same Zen center and the same synagogue in Los Angeles for many years, lived in the same neighborhood in eastern LA, and both of us hailed from the same Canadian city (Montreal) and the same university (McGill), we never really connected.

I saw him often, but when I did, it was because we were in the same place to medicate, study and pray. It never seemed like quite the right time to approach him.

I did tell him once that his music is always rattling around in the back of my head. And it still is.

Once I shouted out to him from the audience at one of  his many concerts that we attended about his high school in Montreal and he was kind enough to shout a joke back.

The Zen service was gentle, full of traditional Sanskrit chants, his music and personal stories of his humility, generosity, grace, and friendship.

He was at once ordinary and extraordinary.

His final gift was his graceful exit from this realm. In a letter to a friend read at the service, he shares that even with his horrible pain and his medications and his pending death, he had never been happier.

Always teaching to the last moment.

I will miss him as I remain greedy to hear more, to learn more from this wise fellow seeker. 

Rest in peace, dear Leonard. You have given me and so many so much.

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Thursday, December 1, 2016

Facebook Live on Genetic Testing in CLL this Sunday, Dec. 4th at 10:30 AM Pacific Time at https://www.facebook.com/CLLsociety/



I am very grateful and a little nervous to not only be presenting our original research (Factors That Influence Patient Treatment Decision Making in the Era of Novel Agents: An Internet-Based Survey of 281 Patients with Chronic Lymphocytic Leukemia (CLL) to the 27,000 expected hematologists at the huge ASH meeting this weekend, and interviewing all your favorite experts and reporting from all the CLL meeting. Now I will be hosting a Facebook Live Interactive workshop of the importance of genetic testing before treatment in CLL.  Join me, ask questions and cheer me along at 10:30 AM Pacific Time on this Sunday, Dec. 4th, live from ASH for my first ever Facebook Live all about CLL  and genetic testing.Your link is  https://www.facebook.com/CLLsociety/

Unlike other commercial websites, our nonprofit never asks you to sign in to access all our fresh and live material, and this is no exception, but it does help us if you would voluntarily sign up to get our helpful alerts and patient friendly newsletter at http://cllsociety.org/newsletter-sign-up/

Thanks. Stay strong.

We are all in this together.

Brian

Founder and volunteer medical http://cllsociety.org

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Monday, November 28, 2016

PAN Foundation has Reopened its CLL (chronic lymphocytic leukemia) Financial Assistance Fund

Friends,
It is tough enough to have CLL, but for those of us on Medicare, the cost of some treatments can be prohibitive.
Organizations such as LLS and PAN (Patient Access Network) offer help through industry-funded pools of financial aid for those who qualify.
Here is a little early holiday gift for some of our readers.
The exciting and timely news that we have confirmed we know is that the PAN CLL financial aid fund is finally reopening on Monday, Nov. 28, 2016. We know it because PAN has chosen the CLL Society to be their partner for offering peer-to-peer CLL counseling. We have been working hard to train volunteers and to develop the policies and procedures needed to protect your privacy and offer robust help. The CLL Society is very proud to partner with PAN.
With your help, we do more than delivering the latest in-depth news in an understandable fashionway, covering ASH and the important medical conferences with interviews with the experts and daily updates., We are also producing important research that can positively influence our future care, advocating for all us around the world, and now offering peer-to-peer support from trained volunteers
Thank you for being part of the CLL Society.
Unlike other web sites, we don’t require visitors to register to gain access to our material, but honestly the number of subscribers is a metric that our supporters assess when considering the size of our grant applications. Without significant grant support, we can’t possibly do everything we are asked.that patients request. If you like what we are doing, please spread the word and ask other friends to subscribe. It really helps. You know that tell us that the news, services, and updates we share are important, relevant and helpful.
No one knows how long it will stay open, so if you need financial help for your meds, I would strongly suggest that you apply applying soon.
You can apply for assistance two ways.
Apply over the phone at 1-866-316-7263 Monday through Friday, 9 a.m. to 5 p.m. EST
OR
Visit the patient portal
So grab seize this early holiday gift while you still can and please tell everyone to join our community and sign up for our alerts and newsletters.
We are grateful for your participation in our work.
Stay strong.
We are all in this together.
Founder and still volunteer medical director of the CLL Society

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Monday, November 21, 2016

Professor Hallek: The micro-environment in CLL(chronic lymphocytic leukemia)

Preparations are underway for the annual meeting of the American Society of Hematology, or ASH as it’s commonly referred. We’re scheduling interviews with CLL experts, scheduling meeting with current and potential supporters of the CLL Society and preparing our poster for the CLL Poster Session on Monday, December 5th! So much to do, so little time. .

Today in the Conference Coverage section, we’ve posted an interview with Professor Michael Hallek where he discusses the role of the microenvironment in CLL and why it is an important target. You can view my article and see the interview here. http://cllsociety.org/2016/11/prof-hallek-microenvironment-cll/

Patient & Caregiver Support Meetings

November 21st @ 7:00 PM in Duarte, CA, the City of Hope CLL Support Group will be meeting. See more information here

Patient Education Meetings

Saturday, December 17th - Post-ASH CLL Patient Educational Forum at City of Hope. The CLL Society, in partnership with City of Hope Medical Center and the Leukemia and Lymphoma Society will be hosting the 2nd annual Post-ASH CLL Educational Forum at City of Hope. Dr. Tanya Siddiqi will be presenting on the latest data on Diagnosis and Frontline Treatment and Dr. Steven Rosen will present on Relapsed Disease and Novel Therapies. You can access the flyer here and pre-registration is requested. We look forward to seeing you there.

Wednesday, December 14th at 6 PM at the Washington Marriott Georgetown in Washington DC: The Lymphoma Research Foundation will be hosting Updates on Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the Doctor series. Dr. Chaitra S. Ujjani from Georgetown University Hospital is the featured speaker. You can find out more information and register here. Dinner will be served and there is no charge to attend.
Saturday, December 10th in Los Angeles, CA. The CLL Society will present at the conclusion of this meeting to assess interest in forming a CLL support group in the west side Los Angeles area. More details in the flyer. Access it here.
In the meantime….
Stay strong.

We are all in this together.

Brian Koffman, MD
11/21/16


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