Susan Allen: Reflecting on Day 1 of the LLS Symposium in Washington DC

May 5, 2014

Hello LLS North Texas,

I set out for Washington DC on Monday May 5th, full of anticipation. On what is my 22 year anniversary of being diagnosed with Hodgkin's Lymphoma Stage 2B it is such an honor and privilege to be attending the "Leading Way to a World Without Blood Cancers.'  It is a three day event that will bring together researchers and scientist who are forging ahead to find a cure, volunteers leaders and passionate advocates all under one roof. We will focus on where we are today and where we are headed in the future to have the most impact on the LLS Mission, "A World Without Blood Cancer."

Monday afternoon we listened to a ten person Research Panel that included two transplant specialist, several research scientists, sweet Emily Whiltehead who is featured in our Fighting Fire with Fire video (who turned 11 on May 2nd), the parents of a child who lost the battle but they remain passionate about LLS, a pediatric and Adult Hematologist/Oncologist. Although all of the panelist are highly educated and shared their vast knowledge with us they also spoke from the heart about their passion to find a cure.

A theme that I heard from the panel is that they understand that treatment for blood cancer is rigorous and a challenge to the body due to the toxicity of the drugs and treatments. In researching and developing new options for patients their work is spent on being "specific targeting" of cancer cells through Genomic testing and paradigm shifting technologies.  That will help doctors focus their work down to the cell and gene where the cancer originated. Dr. Bradner stated, "It is a very special time in biomedical research and it should receive our full attention." At that time that Dr. Lou Degennaro, the acting LLS CEO and Chief Mission Officer, asked the panel, "How can LLS help, where should we focus our efforts to make the most impact?" The panelist were clear in the fact that their goal was a CURE and that means two things: 1. Cancer free/no medication,  and 2. Long term medication induced remission, citing CML and the fact that is is a chronic manageable disease using Gleevac. The main theme - when it comes to funding we CANNOT take our foot off the gas peddle, we must double down and go for it. It is Time to Complete our Mission and "Someday is today."

Our day concluded with two moving survivor stories that had everyone in the audience on their feet knowing that we are moving ahead and WE WILL get there. As far as my survivor story, wow, what a ride!  Going from 22 years ago with four little boys, the youngest 17 days old, a new diagnosis and a treatment protocol to an amazing "Survivorship Journey" and now  working for LLS. Amazing if I must say so myself.

More tomorrow on "Leading the Way to a World without Blood Cancer."

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Susan Allen is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She is a 22-year Hodgkin's lymphoma survivor, registered nurse and a Certified Nurse Navigator.

Contact Susan:
Susan.Allen@lls.org
(972) 996-5905

Freebie Friday: Meet an LLS-Funded Researcher & His Incredible Discovery

The Leukemia & Lymphoma Society has given Dr. Carl June more than $18 million to fund his blood cancer research and as you will see from this remarkable video, the investment is paying off.  Dr. June is just one of the thousands of researchers LLS has funded since its inception.  In 2011 alone, LLS invested more than $68 million in cutting edge research.  Cures are coming and LLS is driving it.

Mission Monday: Your Donations at Work

For some patients with blood cancers, a bone-marrow transplant is their best treatment option. But it is difficult and risky.

A breakthrough trial in Philadelphia by Dr. Carl June is using patients' own immune systems as a safer, better option. In this LLS-funded research, doctors collect a patient's immune T cells, engineer them in the lab as "killer cells" and return them to the patient. The modified cells are trained to attack the cancer and multiply to expand the anti-cancer army.

Last week, success of this trial was heralded in the media. In this "immunotherapy" clinical trial, three adults with chronic leukemia achieved complete remissions with no signs of disease. Four other adults showed partial remissions. And a six-year-old patient diagnosed with acute lymphoblastic leukemia is now seven months in complete remission.

For blood cancer patients everywhere - LLS's drive to develop safer and more effective treatments like this immunotherapy brings hope. And your dollars are making that possible today, not someday.

Mission Monday: Targeted Therapy Research

TARGETED THERAPY RESEARCH

Discovering the molecular abnormalities that cause particular types of blood cancer has been useful

in diagnosis and risk stratification, and in new “targeted drug” development. LLS-funded

investigators have helped advance molecularly targeted treatments that can selectively kill blood

cancer cells versus normal cells. Many of these new treatments benefit not only blood cancer

patients, but also patients with other diseases. For example:

Gleevec® is FDA-approved for patients of all ages with chronic myeloid leukemia (CML), and

is also approved for patients with one form of acute lymphoid leukemia (ALL), myelodysplastic

syndromes (MDS), myeloproliferative disorders and rare forms of stomach and skin cancers.

Related drugs, Sprycel® and Tasigna®, are approved for patients who do not benefit from

Gleevec. One or more of these drugs are also showing promise for patients with various

lymphomas, acute myeloid leukemia (AML), chronic lymphocytic leukemia (CLL), and other

cancers, including brain, breast, head-and-neck, lung, pancreatic, and prostate cancers, and

patients with other diseases including Alzheimer’s, asthma and pulmonary hypertension.

Rituxan® was the first FDA-approved, anti-cancer antibody drug, developed for patients with

forms of B-cell non-Hodgkin lymphoma (NHL). It is now also approved for CLL patients and as

a “maintenance” therapy for follicular lymphoma patients, and showing promise for patients with

ALL and after stem cell transplantation. In addition, it is approved for treating patients with

severe rheumatoid arthritis and two other types of autoimmune diseases. A related antibody drug,

Arzerra®, is approved for CLL patients and showing wider promise.

Velcade®, Thalidomid® and Revlimid® are FDA-approved for patients with myeloma and are

also helping some patients with Hodgkin lymphoma and NHL.

Krypolis® was recently

approved for myeloma patients for whom at least two prior therapies were insufficient. One or

more of these drugs are now being tested for patients with T-cell and B-cell forms of lymphoma,

acute leukemias, as well as AIDS-related Kaposi sarcoma and brain, breast, colorectal, head-andneck,

kidney, liver, lung, ovarian and prostate cancers, and Alzheimer’s disease.

Istodax®, Zolinza®, Dacogen® and Vidaza® target small chemical, “epigenetic” changes. The

first two drugs are approved for patients with peripheral T-cell lymphomas; the latter drugs are

approved for MDS patients. One or more of these drugs are being tested for patients with ALL,

AML, CML, CLL, myeloma and forms of NHL, after stem cell transplantation, and for patients

with breast, brain, kidney, colorectal, head-and-neck, lung, stomach, prostate and ovarian cancers, melanomas well as sickle cell disease and persistent HIV infections.