Tuesday, April 19, 2016

Top 10 list for lymphoma and an important CLL survey

Dr. Leonard is a great teacher and this week we share his top 10 list of what we need to know about lymphoma on our nonprofit's website: http://cllsociety.org.

Remember that any cancer that arises from a lymphocyte is a lymphoma, that of course includes us, so this is a relevant discussion.

While not specific to CLL, it helps us see where our brand of lymphoma fits in and reviews overriding principles in lymphoma management. Well worth a look. And it’s fun. 

If you haven’t completed our 5 minute survey on how you choose your therapy, please, please join the 300+ who already have and help us generate some strong data to share with CLL researchers, doctors, payers, and industry and make our voices heard. Industry and doctors and payers love data.

Stay strong.

We are all in this together.

Brian 

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Monday, April 18, 2016

What Does a CLL Patient and Advocate have in Common with a Diabetes or HIV or RA or Psoriasis Advocate: Plenty


  
What do patients with HIV or aggressive autoimmune arthritis or inflammatory bowel disease or diabetes or cancer or mental illness or psoriasis have in common other than a difficult time with a chronic disease?

Turns out quite a lot if they are also patient advocates.

I have just returned from the 2nd HealtheVoices Conference where 90 plus online patient advocates from around the world and representing a wide range of patient communities met to learn from each other and share best practices and common challenges.

The conference was a chance to reconnect with other e-advocates, meet new friends, and get out of my CLL (chronic lymphocytic leukemia) silo. I am deeply grateful to Janssen and Everyday Health for their sponsorship of the gathering. 

What follows is a few reflections formed from the conference and my life online for the last 8 years.
Patient advocates tend to be found in chronic diseases.

Although many acute illnesses may be treated sub-optimally and there can be controversy in terms of what is the best therapy, most of us either simply recover from our short-term illness or it is our terminal event. Either way, we are usually no longer involved in advocacy because we have moved on, be it from not worrying very much about a disease we can only see in the rearview mirror or from having departed this mortal coil altogether.

In one case we don’t care, in the other it’s too late.

This is no joke.

As a lighthearted example of the first circumstance, I can find no advocacy organizations or bloggers dedicated to lightening the load of the sufferers of an acute and painful sore throat. Sure, we can get plenty of advice online about symptom control for our pharyngitis and we can read guidelines about when to and not to use an antibiotic, but generally the issue is moot in about a week and half. There is simply not enough sick time to generate any sustained long-term passion.

The bigger and much darker issue is that advocacy organizations are usually filled with patients who suffer from the diseases themselves. Sadly, we patient advocates can and do get sick and die. Hence much of the advocacy work in the diseases that too often offer a short leash such as pancreatic or brain or esophageal cancers is either not by the handful of the brave survivors who beat the odds or by surrogates for the cancer fighters such as family and caregivers touched by the disease. Just as history is written by the winners, advocacy is done by the survivors. As a result, the diseases with the worst prognoses often have the fewest online resources. 

We are luckier. The first thing most patient advocates with HIV or diabetes or CLL usually have in common is time: time to consider options and shop doctors and therapies. Please check out the CLL Society’s short welcome video on that topic and more found in the bottom right corner of our opening page.

Many of us will do our doctor and treatment shopping online, so we look to reviews of other authentic health care consumer that have “purchased” the therapies that we are now considering. Patient advocates with a deep social media reach will jump to near to top of our search lists.
Another thing we usually share is being confronted with many choices. There are a dozen possible treatment options for rheumatoid arthritis (RA), but none without its side effects and risks. There are a myriad of ways to control diabetes. Not one approach is clearly best for all. Care for all CLL patients should be individualized based on a huge web of personal and disease state factors. What flavor of RA or diabetes or CLL do you have?

We ask our doctors to throw out the cookbook approach to care and treat the person in front of them. 

One size does not fit all.

The same holds true for most every chronic disease. We advocates want to get out the information to our fellow patients to support their decisions. We can provide real life and sometimes real time practical tips and handholding when needed.

And once decisions are made, we fight to make sure that everyone has access to their best options.
We advocates all work hard to provide some combination of support and information and practical experience and finally access to the best personalized therapies.

And we are all subject to the reality that we have limits. We can get tired. We can get sick. We can get overwhelmed.

Another thing we patient advocates share is the risk of burn out or compassion fatigue. This is hard work, relentless work, often unpaid or under paid, where the demand always exceeds the supply.
No wonder sessions on compassion fatigue are the highest rated at bloggers’ conferences such as the 2nd HealtheVoices Conference.

Ultimately, we are united by our drive to help, to make a difference in our fellow patients’ lives.

So we patients who are patient advocates do indeed have much in common.

Stay strong.

We are all in this together.

Brian

Volunteer Medical Director

Founder
http://bkoffman.blogspot.com

Janssen Global Services paid for my travel expenses for this conference. All thoughts and opinions expressed here are my own.

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Friday, April 15, 2016

Survey to help Canadian CLL (chronic lymphocytic leukemia) Patients

If you have CLL could you please read the below and consider taking a 10 minute survey to help patients in Canada.
The Canadian regulatory system for the approval of new medicines is very similar to Australia, but different than in the USA. Lymphoma Canada It is currently preparing submissions to their decision makers for the following treatments:
· Ibrutinib (Imbruvica) for patients with previously untreated CLL for whom fludarabine based treatment is considered inappropriate
· Ventetoclax (ABT – 199) for patients with relapsed/refractory CLL
Lymphoma Canada like Lymphoma Australia can survey patients and caregivers to provide data to regulators on the side effects and quality of life experienced by those on current therapies and how a new therapy may improve the quality of life for patients. This information can then help the regulators better understand the value of new therapies for patients and their families.
HOW CAN ANY CLL PATIENTS HELP?
Please complete the survey below for Lymphoma Canada. You do not need to live in Canada to complete this survey.
The survey will be open until midnight (Pacific Time- Canada) on Wednesday, April 20th and should only take 10 minutes of your time.
You may access the survey by clicking the link below.
https://www.surveymonkey.com/r/SRWKYMX

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Monday, April 11, 2016

Patient Survey, New CLL support groups, Life at the Beach, and Living Well with CLL (chronic lymphocytic leukemia)

Friends, 
It’s been a very busy year and this week I spent a few days away from my patients and my online and live support group efforts just walking, reading, and resting at a nearby state park on the beach. It was wonderful! 
As I prepare to speak at a symposium at the 2016 European Hematology Association Congress in Copenhagen in June, I am asking you to please consider completing our Reader Poll [https://asktellq12016.questionpro.com/] on how we patients and caregivers make decisions about therapy. It takes less than 5 minutes to complete. Many thanks to the 190 folks who have already done so!  We’ll present the aggregated results in a future issue of The CLL Tribune.
In our live support group efforts, we are forming 2 new patient and caregiver support meetings: Charlotte, NC and Tampa FL.  
• If you live in Charlotte, NC and are interested, please complete the online survey to indicate your preferences for days and times. [https://charlottegroup.questionpro.com/]
• If you live in Tampa, FL and are interested, please complete the online survey to indicate your preferences for days and times. [https://tampa.questionpro.com/]
We look forward to getting started. For those interested in getting a CLL support group going on the west side of the LA Basin, or in attending our Orange County group that meets at UCI, or the group that meets at City of Hope, please send us an email at support@CLLSociety.org and we will provide you with the necessary information.
Find out about other’s experiences with support groups in the Support area of the Living Well with CLL section of the website. [http://cllsociety.org/living-well-with-cll/support/] Teresa Altemeyer wrote a great article in the latest issue of The CLL Tribune about The Value of Support Groups – A Personal Perspective about how she was asked by her CLL specialist to facilitate a support group in Indianapolis, Indiana and the positive effect it had on her life. Check it out. [http://www.cllsociety.org/newsletter/quarter-1-2016-volume-2-issue-1/living-well-with-cll-quarter-1-2016-volume-2-issue-1/value-support-groups-personal-perspective/]

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Monday, April 4, 2016

Busy Few Weeks and a Therefore Rather Ironic Article on Fatigue in CLL (chronic lymphocytic leukemia) by Dr. Estrov

Hi Friends,

It’s been a busy few weeks.

Last week was exciting as we marked the first year since we launched our website, published our first 2016 issue of The CLL Tribune, and fielded a short survey in our Reader Poll on how we patients and caregivers make decisions about our therapy. I hope to present the results at a symposium at the 2016 European Hematology Association Congress in Copenhagen in June, so I am asking you to please complete it. It takes less than 5 minutes. Many thanks to the 78 folks who have already done so!

Two weeks ago in Anaheim, I spoke in front of more than 550 patients and caregivers on behalf of LLS at their southern Californian Blood Conference. My topic was “How to be your own advocate”. It was a great privilege, in every way, to be able to give such a talk after 10 years of dancing with my CLL.

On April 2nd, the CLL Society had an active table sharing CLL information and resources at the LRF Lymphoma Workshop in Manhattan Beach.

Both meetings had superb CLL breakout sessions, in Anaheim by Dr. Tanya Siddiqi of City of Hope, and in Manhattan Beach by Dr. Herbert Eradat of UCLA. Thanks to them both for donating their time.

At both meeting we collected signatures for those interested in getting a CLL support group going on the west side of the LA Basin. It you missed the meetings and are interested, please send us an email at support@CLLSociety.org and we will make you aware of our interest survey when it launches.

This week in the 2015 Conference Coverage section of the CLL Society website, we have posted an interesting article written by Dr. Zeev Estrov from MD Anderson Cancer Center describing the abstract they presented at ASH 2015 focused on exploring treatment options to address CLL fatigue. 

You can see a summary and view our interview on the website.

We are also gathering interest in forming 2 new patient and caregiver support meetings: Charlotte, NC and Tampa FL.

If you live in Charlotte, NC and are interested, please complete the online survey to indicate your preferences for days and times.

If you live in Tampa, FL and are interested, please complete the online survey to indicate your preferences for days and times. We look forward to getting started.

In the meantime….

Stay strong.

We are all in this together.

Brian Koffman, MD
Volunteer Medical Director of the CLL Society


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Monday, March 28, 2016

Lymphoma Workshop: Understanding Lymphoma Basics and Current Treatment Options: Lots of Good Stuff on CLL

This Saturday in Manhattan Beach, Lymphoma Research Foundation (LRF) is putting on a patient education meeting.

Try to make it.

Dr. Herb Eradat out of UCLA is doing the CLL breakout session so that session is sure to be great.  He is very sharp, totally dedicated to CLL, and a nice guy too.

Dr. Sven De Vos is chairing the meeting- another good reason to attend. I guarantee you will walk away with valuable information from his sessions.

In fact all the speakers are top notch.

I and other volunteers from the CLL Society will be there to share information about our online services and survey the interest in starting new CLL support and education groups in LA and Ventura Counties.

And it's in a beautiful setting.

And it's free.

More than enough reasons to make the drive.

For more information and to register, please check out: http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=9357081#location

The meeting will be at:

Manhattan Beach Marriott
1400 Parkview Avenue
Manhattan Beach, CA 90266
Saturday, April 2, 2016
7:30 AM - 3:30 PM

If you do come, please say hello and drop by our CLL Society table.

So remember:

Smart Patients Get Smart Care™

And join us this Saturday in Manhattan Beach.

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Wednesday, March 23, 2016

Venetoclax in refractory CLL (chronic lymphocytic leukemia) patients with deletion 17p And News about Upcoming Support and Education Opportunities

Friends,

This week in the 2015 Conference Coverage section of the CLLSociety.org we have posted my final interview with Dr. Stephan Stilgenbauer while we were at the American Society of Hematology (ASH) annual meeting in December 2015 in Orlando. We discussed his late breaking abstract on venetoclax in refractory CLL patients with deletion 17p. You can see a summary and view our interview here. [http://cllsociety.org/2016/03/ash-2015-dr-stephan-stilgenbauer-dramatic-responses-venetoclax-relapsed-refractory-rr-17p-deleted-cll/]

Last Saturday, it was my privilege to speak at The Southern California Blood Cancer Conference sponsored by the Leukemia and Lymphoma Society in Anaheim, California on being your own advocate. The CLL Society team was in attendance at our booth and it was great to meet all of you who were there. It was a super meeting.

Our first satellite support and education group launched yesterday at City of Hope, Duarte CA and I believe the 15 patients and caregivers shared and learned together. We will be meeting the third Monday of each month at 7 PM of every month. For more information, view the flyer. [http://www.cllsociety.org/docs/cohmarch2016.pdf] There is no charge to attend.

We are also forming a new patient and caregiver support meeting in Charlotte, NC. If you are interested, please complete the online survey to indicate your preferences for days and times. [https://charlottegroup.questionpro.com/] We look forward to getting started. 

There is another educational meeting coming up, this time by LRF.

April 2nd at 7:30 AM: The Lymphoma Workshop: Understanding Lymphoma Basics and Current Treatment Options hosted by the Lymphoma Research Foundation will be held in Manhattan Beach, California. It will be held at the Manhattan Beach Marriott from 7:30 AM to 3:30 PM. You can find out more information and register here. [http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=9357081#location] There is no charge to attend.

In the meantime….

Stay strong.

We are all in this together.

Brian Koffman

Volunteer Medical Director of the CLL Society

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