LLS/Baylor Patient Advocate: Myeloma Support Group

March is Myeloma Awareness Month and the perfect time to highlight a free support group that is open to everybody at Baylor University Medical Center in Dallas. 

Every second Saturday, the North Texas Myeloma Support Group meets at Baylor on the 10th floor of the Sammons Cancer Center from 10:00 a.m. – 1:00 p.m. This group is a wonderful group of men and women that are patients and caregivers; some of whom are 10+ year survivors, some are newly diagnosed, and everywhere in between. The group has speakers who discuss new drug therapies, nutrition, caregiver support, and many other topics specific to their disease.

At a recent meeting, we had a few newcomers to the group, some of whom had recently been diagnosed with multiple myeloma. There is so much information out there to sift through – which doctors specialize in treating myeloma, what treatment to do, what the numbers mean, and how to cope. These patients and caregivers who came to the meeting with a "deer in the headlights" look left  that afternoon with answers to their questions, acknowledgement of their fears, steps to move forward, and a sense of community. We were able to sign them up for the LLS First Connection program and get them plugged in with other resources to help them navigate through their diagnosis.

If you or a loved one have been touched by myeloma, I strongly encourage you to come to one of these groups. 

Blessings,

Kelsey __________________________________________________________________________________

Kelsey Thompson is a Patient Advocate for the North Texas Chapter of The Leukemia & Lymphoma Society.  She understands the patient experience as a blood and marrow transplant registered nurse.  She is based at Baylor University Medical Center in the Cvetko Center.  She meets with patients and their families after receiving a blood cancer diagnosis.  

Contact Kelsey:
(214) 818-7890 

Kelsey.Thompson@lls.org

Patient Access Manager: Myeloma Awareness Month

Hello again, 

As I am sure you have heard, March is Myeloma Awareness Month.  Right now The Leukemia & Lymphoma Society (LLS) has more than $38.5 million invested into the best and brightest researchers working specifically on finding cures and treatments for myeloma.  LLS invested $8 million of that just in the last year.  We are dedicated to the myeloma patients (and their families) that we serve.

Myeloma was a big topic at the annual American Society of Hematology (ASH) meeting recently.  Right now there are a number of clinical trials underway for initial therapy or for relapsed myeloma.  Three specific treatments that involve monoclonal antibodies (elotuzumab, daratumumab, and SAR650984) are thought to be game changers in the treatment landscape.  It's definitely an exciting time to be part of the cancer community!

If you would like to attend a free education program on myeloma from LLS, we have one coming up next month that is focused on managing the side effects of these myeloma drugs.  Below is the information on the program:

Living with Myeloma - Managing Side Effects and Quality of Life
Date: April 8, 2015
Time: 1:00 - 2:30 p.m. ET
Location: Telephone/web
Register: Online by clicking here or by phone (855) 676-7723
Topics:  Current and emerging treatments for myeloma
              Monitoring disease progression
              Managing symptoms and treatment-related side effects
              Discussing quality-of-life issues with your healthcare team
Presenter:  Sagar Lonial, MD, FACP
                  Professor and Executive Vice Chair
                  Department of Hematology and Medical Oncology
                  Winship Cancer Institute
                  Emery University School of Medicine

I hope that you will join us for this free educational program.  If you can't make it but would like to discuss any of these topics, please reach out to me directly.  

I look forward to chatting with you!

Seetha

_______________________________________________________________________________

Seetha Modi is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She has an Masters in Public Health and has experience working with varied aspects of the healthcare industry, including hospitals, the CDC and other health-related nonprofit organizations.

Contact Seetha:

Seetha.Modi@lls.org

(972) 996-5905

Thankful Thursday: Advocacy

Take action now.
Make your voice count.

You are cordially invited to join The Leukemia & Lymphoma Society (LLS) for a discussion about the role that grassroots advocates play in finding a cure for blood cancers.  Together, our voices have a powerful impact on legislators that will result in much needed support for blood cancer research and patient care.

SAVE THE DATE:Tuesday, January 15, 2013

2:30-4:30p

Presentations & Town Hall Discussion

Baylor University Medical Center

Charles A. Sammons Cancer Center

10th Floor Conference Center

3410 Worth St.  Dallas, TX 75246

Parking in Garage 4 (off Worth St.)

Vouchers are available for attendees

Feating presentations by:

Scott Riccio, Vice President, LLS Advocacy and External Affairs

Brian Rosen, Vice President, LLS Government Affairs

Jon Hoffman, Manager, LLS Advoacy and Volunteer Engagement

Please RSVP by Tuesday, January 8, 2013 to Kim.Brown@lls.org or (972) 996-5905

What does it mean to be an advocate?

• Make your voice heard
• Communicate with legislators about issues that affect blood cancer patients, family members or caregivers
• Represent blood cancer patients among local healthcare coalitions

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.