Friday, June 24, 2016

Dr. Jeff Sharman on some interesting clinical trials for CLL, an important Canadian survey, and much more

This week in the Clinical Trials/The Basics section of the CLL Society website, we’ve posted an interview with Dr. Jeff Sharman where we talked about how clinical trials are developing. We also reviewed some very important things that patients should know and do regardless of whether they are being treated within a trial.
You can read a summary of our discussion and watch my interview with Dr. Sharman here. http://cllsociety.org/2016/06/dr-jeffrey-sharman-best-practices-new-cll-trials/
For Patients Who Have Been Treated with Venetoclax: Lymphoma Canada is preparing a submission for the pan ­Canadian Oncology Drug Review (pCODR) for Venetoclax for the treatment of patients with chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL) who have received at least one prior therapy; this includes patients with 17p deletion.You can help by completing their survey, which will provide us with the patient input required for the submission. pCODR uses this information to help them make recommendations to the provinces and territories regarding funding for new cancer drugs.You do not need to live in Canada to complete this survey. You can access the survey here. https://www.surveymonkey.com/r/PSPKRHK Consider taking the time to help out your fellow CLL patients in Canada. Thanks.
NEXT WEEK: We will be publishing the next issue of The CLL Tribune. You can look forward to:
· Reading/viewing an interview with Dr. Jeff Jones about Venetoclax from the recent EHA meeting in Copenhagen in Conference Coverage
· Read answers to reader questions by Dr. Rick Furman in Ask the Doctor
· Learn about what bone marrow does in The Basics Section
· In Beyond the Basics, find out about the ASCO sponsored TAPUR trial which is looking for new creative uses for already approved targeted therapies
· Learn new facts about CLL in the Did You Know section
· View some data from our most recent Reader Poll and share with us your opinions on CLL experts and whom you might recommend to other patients in our Ask & Tell section
In Living Well with CLL, you can read about:
o  WhyYou Should See a CLL Specialist
o  How my Support Group Saved my Life
o  I Don’t Have CLL. Yes, I Do. Now, I Don’t.
o  On Being a Novice Patient
o  May I Remember Never To Forget
Stay strong.
We are all in this together.
Brian Koffman, MD
Volunteer Medical Director of the CLL Society
http://cllsociety.org

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Sunday, June 19, 2016

Dr, Bill Wierda on the Importance of Clinical Trials in CLL

I’m home from the European Hematology Association Congress in Copenhagen. 

I received very positive feedback on my lecture and the preliminary data from our Reader Poll with many requests for more information. We plan to follow up with another survey, Seems the 1000 plus hematologists to whom I presented the data and the folks from industry really want to know what we patients think and want.

I attended several lectures on CLL, reviewed dozens of abstracts, and had some great interviews with world experts that I look forward to sharing with you in the near future. 

After the last long day, I finally got out of the convention center long enough to walk along the harbor and see the famous The Little Mermaid statue.

This week in the Clinical Trials/The Basics section of our website we’ve posted an interview with Dr. Bill Wierda of MDACC where we talked about the value of clinical trials and how he approaches the discussion with patients about joining a clinical trial. You can read a summary of our discussion and watch my interview with Dr. Wierda here. http://cllsociety.org/2016/06/dr-william-wierda-clinical-trials-cll-chronic-lymphocytic-leukemia/

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, June 6, 2016

Interview with Dr. Kipps on CLL(chronic lymphocytic leukemia) research from ASH 2015

Well, my bags are finally packed. Better be! I am at the airport ready to go to the European Hematology Association meeting in Copenhagen. 

Before the meeting starts on Thursday, I’ll be presenting some preliminary data from our Reader Poll at a symposium on Wednesday and attending a couple of other meetings with global Lymphoma groups. I have numerous other meetings and interviews set up and I’m hoping to get a little bit of time outside the convention center to at least see The Little Mermaid statue.

This week in the Conference Coverage section of the CLL Society website, we’ve posted a rambling interview with Dr. Thomas Kipps from ASH 2015. We discussed the latest data in the fight to defeat CLL using signal blockers, Venetoclax, ROR1 antibodies as well as the importance of more research. You can read a summary of our discussion and watch my interview with Dr. Kipps here. http://cllsociety.org/2016/06/dr-kipps-signal-blockers-venetoclax-ror1-antibodies-importance-research/  

From time to time, we will make you aware of in-person meetings coming up for those of us affected by CLL. In June, they include:

June 16th at 6 PM in Salt Lake City, UT: The Lymphoma Research Foundation will be hosting Updates on Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the Doctor series. You can find out more information and register here. http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=9384957 

There is no charge to attend.
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, May 30, 2016

Best Personalized Care™ in CLL (Chronic Lymphocytic Leukemia)

I was asked to write one page about how our nonprofit CLL Society helped patients overcome friction points in their care. Here is what I came up with it.

The nonprofit CLL Society Inc. (CLLS) is dedicated to ensuring that all patients with Chronic Lymphocytic Leukemia (CLL), the most common adult blood cancer, get their Best Personalized Care (BPC™).

BPC is vital because CLL is in fact many diseases, ranging from a lazy or indolent cancer that doesn’t shorten a patient’s life, to a well-behaved leukemia that responds obediently to treatment, and most menacingly, to a constantly mutating disorder that quickly destroys immunity and then kills.

Each unique case of CLL demands a different therapeutic approach.

Adding to this complexity is the rapidly changing therapeutic landscape with the multiple recent drug approvals, new guidelines, exciting clinical trials, and the heterogeneity of patients. CLLS understands how difficult it can be for each patient to get the BPC.

We have developed tools to help overcome common friction points in accessing the best care:

1.     Comprehensive current information: There is a lack of up-to-date knowledge in the medical and patient community. Despite being the most common blood cancer, it is still an orphan disease. Annually for each case of CLL, there are approximately 14 new breast cancer patients and 25 survivors and 14 new prostate cancer patients and 24 survivors. Busy community oncologists simply can’t keep up with the evolving and complex nuances of individualized care for the rare CLL patient.

2.     Expert contacts: Referral to true CLL experts for 2nd opinions and access to clinical trials can be difficult as physician networks are increasingly being narrowed. We provide links to top CLL doctors and help manage referrals.

3.     Insurance help and resources: Payors’ decisions may seem arbitrary and more determined by financial rather than clinical concerns. The appeal process demands a well-informed patient or advocate. We support patients and provide research and resources for their appeals.

4.     Self-advocacy tools: The best medications may be expensive, tricky to administer, and often need to be used very long term. Thus, their use may be subtly discouraged or not even offered by health plans and providers. Prior authorizations and tiered pharmaceutical benefits are further obstacles to best care. We provide information to help patients push for BPC and links to financial help.

5.     Compliance aids: New oral therapies put a premium on the patient’s adherence, persistence and understanding of how their medications work, effectively transferring responsibility from the provider to the patient who may need tools to help get the most out of their treatment. We have compliance tools to help track meds and labs.

The CLL Society, a patient driven, physician curated 501(c)3, is dedicated to the unmet needs of the CLL community. BPC for all is possible when patients are aware and active in their care because we believe that:


Smart Patients Get Smart Care

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Tuesday, May 24, 2016

Patient Advocacy in CLL (chronic lymphocytic leukemia)

Friends,

This past weekend I was in Paris representing the US (and Canada) for the planning meeting for the CLL Advocacy Network (CLLAN) that is being organized in Europe with a global reach. Our first meeting for CLL advocate organizations will be in Belgrade, Serbia in November. If you are an advocate and are interested, please contact me.

We were honored to have the mentorship of both Giora Sharf who together formed the non-profit organizations, The CML Advocates Network and the Leukemia Patient Advocacy Foundation and also Nick York of CLLSA, the UK based CLL Support Association. Their presence helped provide an experienced-based foundation for this new CLL advocacy organization. 

You can see my past interview with Giora and Jan Geissler, another one of the founders of CML Advocates Network and who is also heavily involved with EUPATI or European Patients‘ Academy on Therapeutic Innovation. They discuss their studies on medication adherence in CML, a topic that will have increasing relevance in CLL. Part 1 is here and part 2 is here.

This week in the Living Well with CLL/Support section of the CLL Society website, we’ve posted an interview with Sharon Millman, the CEO of another non-profit organization, Lymphoma Australia, located in Brisbane. The CLL Society partnered with them to host a patient/caregiver program prior to the iwCLL meeting in September 2015. You can read about their organization and watch my interview with Sharon here. Please excuse the video snafu towards the end of the interview where Sharon is slightly out of the frame.

THANK YOU AGAIN TO OUR READER POLL PARTICIPANTS! Data analysis is in progress and we are really excited with the preliminary results. We really appreciate the time you spent to contribute to our research and look forward to sharing the data in the future.

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, May 16, 2016

What about Duvelisib for CLL (chronic lymphocytic leukemia)?

Friends,
This week in the Beyond the Basics/Treatment section of our website, we’ve posted an article about another treatment under investigation called IPI-145 or duvelisib, a PI3 kinase inhibitor. You can read about how it works, the data that has been released and ongoing clinical trials here. [http://cllsociety.org/2016/05/ipi-145-duvelisib-cll/]
In other news, the FDA expanded the Imbruvica® (ibrutinib) label to include overall survival data in previously untreated CLL and added a new indication for small lymphocytic lymphoma (SLL) patients. Read more about it in our News section here. [http://cllsociety.org/2016/05/fda-expands-imbruvica-label-include-os-data-plus-new-indication-sll/]
THANK YOU AGAIN TO OUR READER POLL PARTICIPANTS! Data analysis is in progress and we are really excited with the preliminary results. We really appreciate the time you spent to contribute to our research and look forward to sharing the data in the future.
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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Saturday, May 14, 2016

A Therapeutic Escape For Cancer Advocates


Miraval, Arizona, home to the ESCAPE Conference August 14-17, 2016

This is a super conference run by friends of mine from Bag It, a wonderful nonprofit, in an amazing setting of beauty and tranquility and challenge for those doing cancer advocacy. Check out http://escape4advocates.org I was lucky to go twice, but will miss it this year.

Here are some questions to help you decide about attending from their home page.


Is escape right for you? Are you…

  • On the front lines of cancer advocacy as a professional or volunteer survivorship advocate?
  • Affiliated with a nonprofit cancer organization?
  • A patient educator, navigator, social worker, blogger, research reviewer, community outreach/support group leader or engaged in other advocacy work?
  • Seeking to gain productive collaborations and powerful partnerships with fellow cancer advocates, industry representatives and other stakeholders?
  • Wanting to know more about how to effect change in public policy on a local, regional, and national level?
  • Looking for ways to combat compassion fatigue and prevent burnout?
Let me add a few more.

  • Want to stay in a setting where there are no cell phones allowed in the public spaces, no tipping, great food and fresh juices (all included with the cost of your stay), amazing landscapes, incredible classes, world class spa treatments, saunas, pools and much more, and most importantly a 3 day meeting with inspiring and powerful folks to learn from and to share your cancer advocacy journey. 
  • Check out the agenda here. These are all great speakers. 
  • This is being held at Oprah's favorite spa: Miraval! Do I need to say more?
Wish I could go again, but if you do go, let me know about your experience.

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