August 13, 2019
Friends,
If you’ve been reading my blog (if not, you can access it here), I’m feeling much better and getting stronger every day. Still basking in the news that my Day + 14 blood work showed that there is no longer any evidence of CLL in my peripheral blood. I have a bone marrow biopsy later this week and a repeat CT scan so we’ll see what’s going on inside.
This week we are posting an interview from ASH 2017 with Dr. George Follows where we discussed the MURANO trial (venetoclax/rituximab against bendamustine/rituximab for the treatment of patients with relapsed/refractory CLL. You can read my summary view the interview or read the transcript here.
Today many cancer treatments are only available as oral medications, but the cost can be prohibitive as oral medications are paid for differently than IV chemo. This is a potentially life threatening issue for some cancer patients. While many states have locally addressed oral parity for cancer medications, treatments covered by federal programs such as Medicare are not touched until there is federal legislation. Fortunately there is H. R. 1409: THE CANCER DRUG PARITY ACT. For more information and how you can support this pending congressional bill, please see: http://peac.myeloma.org/wp-content/uploads/2013/08/HR-1409-One-Pager-March-2017.pdf
What are your thoughts on Printed Materials to reinforce the information you get from your healthcare providers? We’d love to hear your thoughts! You can access the survey here.
CLL Patient Support Group Meetings Coming Up
NEW CLL SUPPORT GROUP MEETING IN CHICAGO AND CENTRAL MASSACHUSETTS (May 12th)! See below and stay tuned for more information on others!
Tuesday, April 17th at 7:00 PM in Chicago, IL – The Chicago CLL Support Group, sponsored by the CLL Society will be meeting FOR THE FIRST TIME. More information here.
Thursday, April 19th at 6:00 PM in Milwaukee, WI – The Milwaukee CLL Support Group, sponsored by the CLL Society will be meeting. More information here.
Thursday, April 19th at 7:00 PM in Minnetonka, MN – The Twin Cities CLL Support Group, sponsored by the CLL Society will be meeting. More information here.
Thursday, April 19th at 7:00 PM in Denver, CO – The Denver CLL Support Group, sponsored by the CLL Society will be meeting. More information here.
Saturday, April 21st at 10:00 AM in Belmont, NC – The Charlotte CLL Support Group, sponsored by the CLL Society will be meeting. More information here.
Saturday, April 21st at 10:30 AM in Tampa, FL – The Central Florida CLL Support Group, sponsored by the CLL Society will be meeting. More information here.
Saturday, April 21st at 1:00 PM in Dedham, MA – The Boston CLL Support Group, sponsored by the CLL Society will be meeting. More information here.
Saturday, April 21st at 3:00 PM in Vienna, VA – The Washington DC-area CLL Support Group, sponsored by the CLL Society will be meeting. More information here.
Sunday, April 22nd at 3:00 PM in New York City, NY – The NYC CLL Support Group, sponsored by the CLL Society will be meeting. More information here.
CLL Patient Education Meetings
Leukemia & Lymphoma Society Sponsored Meetings
Saturday, April 28th from 9:30 AM – 3:00 PM in Indianapolis, IN
The Leukemia & Lymphoma Society (LLS) invites you to attend a Central Indiana Blood Cancer Conference being held at the Kiwanis International Headquarters. Seven of the premier hematologist oncologists in Central Indiana will be presenting. This event is free but registration is required. Find out more information and register here.
Saturday, May 5th from 9:00 AM – 3:00 PM in Washington DC
The Leukemia & Lymphoma Society (LLS) invites you to attend the DC Metro Blood Cancer Conference being held at the Hyatt Regency Capitol Hill. Farrukh Awan, MD, MS from the Ohio State University Comprehensive Cancer Center will be presenting the CLL Breakout session. This event is free but registration is required. Find out more information here. Register here.
Saturday, May 19th from 12:00 PM – 2:00 PM in Durham, NC
LLS invites you to attend Living Well with CLL: Diagnosis, Treatments and Support being held at the DoubleTree Hilton Raleigh Durham Airport at Research Triangle Park. Danielle Brander, MD from Duke Cancer Institute will be presenting. This event is free but registration is required. Lunch will be provided to registered attendees. Find out more information and register here.
Thursday, May 31st from 6:00 PM – 9:00 PM in Bloomington, MN
LLS invites you to attend Living Well with CLL: Diagnosis, Treatments and Support being held at the Marriott Minneapolis Airport in Bloomington, MN. Veronika Bachanova, MD, PhD and William Robiner, PhD, ABPP, LP from University of Minnesota will be presenting. This event is free but registration is required. Dinner will be provided to registered attendees. Find out more information here. Register here.
SAVE THE DATES – FUTURE CLL PROGRAMS SPONSORED BY LLS PLANNED!
Cleveland, Ohio on June 7th
Lymphoma Research Foundation Sponsored Meetings
Saturday, April 28th from 7:30 AM to 3:30 PM in Boston, MA
The Lymphoma Research Foundation invites you to attend a FREE Lymphoma Workshop: Understanding Lymphoma Basics and Current Treatment Options at the Boston Marriott Copley Place featuring a CLL breakout session with Dr. Matthew Davids from Dana-Farber Cancer Institute. Find out more information and register here.
Tuesday, May 1st from 6:00 PM to 8:30 PM in Ann Arbor, MI
The Lymphoma Research Foundation invites you to attend a FREE program: Ask the Doctor About Lymphoma: Updates on Lymphoma and Treatment Options at the Hilton Garden Inn Ann Arbor featuring Dr. Sumana Devata, MD from the University of Michigan Comprehensive Cancer Center. Find out more information and register here.
Wednesday, May 2nd from 6:00 PM to 8:30 PM in Minneapolis, MN
The Lymphoma Research Foundation invites you to attend a FREE program: Ask the Doctor About Lymphoma: Updates on Lymphoma and Treatment Options at the Malcolm Moos Health Sciences Tower at the University of Minnesota featuring Veronika Bachanova, MD, PhD from the University of Minnesota. Find out more information and register here.
CLL Patient Advocacy Group and Lymphoma Canada Sponsored Meeting
April 19-21, 2018 in Niagara Falls, Ontario, Canada
The CLL Patient Advocacy Group, Lymphoma Canada and the Juravinski Cancer Center invites you to attend a free 2 day meeting CLL Live 2018 Many Reasons for Hope at the Hilton Hotel and Suites in Niagara Falls, Ontario. Find out more information here. Register here.
The Ohio State University Sponsored Meeting
April 23, 2018 in from 6:00 – 7:30 PM in Columbus, OH or Streaming
The James Cancer Hospital and Solove Research Institute at Ohio State University invites you to attend Ask the Expert: Clinical Trials in CLL: Overview and Opportunities being held in the Wasserstrom Family Conference Room L035. Dr. Kerry Rogers will discuss clinical trials for CLL including types of clinical trials, practical information about what participating in a trial may mean, and how to decide if a clinical trial is right for you. More information here. Register here.
Blood & Marrow Transplant Information Network Sponsored Meeting
April 28-29, 2018 in Denver, CO
The BMT InfoNet invites you to attend the 9th National Celebrating a Second Chance at Life Survivorship Symposium 2018 for bone marrow, stem cell and cord blood transplant survivors and caregivers. This unique two-day symposium educates and empowers survivors about how to cope with long term side effects of transplant. It’s being held at the Hyatt Regency Aurora – Denver Conference Center in Aurora, CO. Find out more information here. Register at https://www.bmtinfonet.org/symposium2018
In the meantime….
Stay strong.
We are all in this together.
Brian Koffman, MD
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