May 14, 2016 Meeting – “Building Resiliency, Living with Uncertainty”

Hello Friends,

In May our guest speaker will be Kava Schafer, MDiv, MA. The title of her presentation is “Building Resiliency, Living with Uncertainty.” Ms. Schafer is a non-denominational chaplain with the Abramson Cancer Center’s Palliative Care Program. She plans to present on ways of gaining control when living with myeloma, avoiding distress and coming to peace with dying. She is a compassionate speaker and listener who has helped many live with their severe, chronic illnesses with more peace within themselves.

PMMNG meetings are held the second Saturday of every month (except August), 1:30 – 3:30 PM, at the Ralston House, 3615 Chestnut Street, Philadelphia, PA (near the University of Pennsylvania campus). There is free parking behind the building, accessible from Ludlow Street.

Newcomers are especially welcome.

Nancy Stewart & Cindy Chimielewski Attend CURE Heroes Award Ceremony

Hi PMMNG friends,

PMMNG members Nancy Stewart and Cindy Chimielewski attended the CURE Multiple Myeloma Heroes Award Gala on March 18 at the Eden Roc Hotel in Miami, FL. Nancy attended because she nominated Mike Katz, who was honored as a member of the inaugural group of CURE Multiple Myeloma Heroes. Cindy attended as Nancy’s guest.

As some of you may know, Mike Katz, from the New York city area, was a tireless patient advocate for multiple myeloma and other cancers. Sadly, he died about a year ago.

Below are some photos from the Gala, as well as a copy of Nancy’s nomination form for Mike.

For more information about the Gala and the inaugural class of Multiple Myeloma Heroes, please visit CURE’s web page about the event.

 

MM-151ANancy Stewart, Marlee Matlin (keynote speaker), Jason Katz (who accepted the award for his father), and Kathy LaTour (CURE Magazine Mistress of Ceremonies)

 

MM-133ADr. Sundar Jagannath (Director of the Multiple Myeloma Program at Mt. Sinai Hospital in NYC), Sharon Katz (Jason Katz’s wife), and Jason Katz

 

MM-112AMarlee Matlin, Cindy Chimielewski, and two unidentified attendees

 

img046Nancy Stewart’s nomination form for Mike Katz

April 9, 2016 Meeting – No Meeting

Hello everyone,

Just a reminder that there will be no April, 2016 PMMNG meeting.

Instead, many of us will be attending the International Myeloma Foundation’s Patient & Family Seminar in Philadelphia on April 8-9. We encourage you to consider attending too! These seminars provide vital, up-to-date information about multiple myeloma presented by experts. In addition there are plenty of opportunities to share experiences with other myeloma patients and caregivers.

Registration is still open.

March 12, 2016 Meeting – “Myeloma-Related Legal Issues”

Hello Friends,

Jess Leventhal, Esq., from the law firm of Leventhal Sutton & Gornstein, will speak about legal issues of interest to multiple myeloma patients and their caregivers. Topics will include Social Security Disability, Supplemental Income, and many others.

Please join us for this opportunity to hear information that may help you deal with the potential financial impact of a myeloma diagnosis. And, as always, there will be plenty of time after the formal portion of the meeting for informal discussion with other patients and caregivers.

Handout Listing Legal Resources for Multiple Myeloma Patients

PMMNG meetings are held the second Saturday of every month (except August), 1:30 – 3:30 PM, at the Ralston House, 3615 Chestnut Street, Philadelphia, PA (near the University of Pennsylvania campus). There is free parking behind the building, accessible from Ludlow Street.

Newcomers are especially welcome.

2016 Dr. Brian Durie Humanitarian Award

Hello PMMNG Friends,

The Philadelphia Multiple Myeloma Networking Group is soliciting nominations for the 2016 “Dr. Brian Durie Humanitarian Award”.  This award is presented to someone who has made a significant difference in the world of Myeloma and will be presented at our upcoming IMF Patient and Family Seminar scheduled to take place in Philadelphia on April 8-9, 2016.

This person should possess the following qualities: being dedicated to finding a cure, whether it is through research, education, financial support or volunteering.  They can be a medical professional such as a doctor or a nurse or other impactful individuals such as a social worker, educator, philanthropist, fundraiser or a caregiver.  We are looking for people who inspire you and offer you and your family a sense of hope.

Please take a few minutes out of your busy schedule to read the nomination form (see the link at the bottom of this post) and think about people who have made an impact in your life and the lives of others who have multiple myeloma or are caregivers.  In addition, your nomination could have been actively engaged in promoting awareness of this disease in the Philadelphia and close surrounding areas as well.

To nominate someone, please fill out the nomination form and send it back to us no later than February 15, 2016.

Thank you for your time and consideration.  We sincerely appreciate it!

Best regards,

The PMMNG 2016 Brian Durie Humanitarian Award Committee:

Marilyn Alexander (malex19115@comcast.net)
Nancy Stewart ( n_nstewart@msn.com)
Maddie Hunter (Maddie@hunterunlimited.com)

Dr Brian Durie Humanitarian Award Nomination Form

February 13 Meeting: “American Society of Hematology (ASH) Update”

Hello,

Drs. Edward Stadmauer and Alfred Garfall, of the Division of Hematology/Oncology at the Hospital of the University of Pennsylvania, will give us the latest updates on multiple myeloma research as presented at the December 2015 meeting of the American Society of Hematology. 2015 was an amazing year in the world of multiple myeloma, so we are sure that Drs. Stadmauer and Garfall wiill have plenty to talk about.

Please join us for this opportunity to hear about the latest news in myeloma research. And, as always, there will be plenty of time after the formal portion of the meeting for informal discussion with other patients and caregivers.

PMMNG meetings are held the second Saturday of every month (except August), 1:30 – 3:30 PM, at the Ralston House, 3615 Chestnut Street, Philadelphia, PA (near the University of Pennsylvania Campus). There is free parking behind the building, accessible from Ludlow Street.

Newcomers are especially welcome.

Dr. Garfall’s Slides

January 9 Meeting: “Understanding Your Lab Results”

Happy 2016!

Tiffany Freiband, RN, MSN, OCN, Senior Clinical Nurse Consultant at Celgene, will present on “Understanding Your Lab Results.” We will also view and discuss the IMF video “How to Keep Electronic Medical Records.”

PMMNG meetings are held the second Saturday of every month (except August), 1:30 – 3:30 PM, at the Ralston House, 3615 Chestnut Street, Philadelphia, PA (near the University of Pennsylvania Campus). There is free parking behind the building, accessible from Ludlow Street.

Newcomers are especially welcome.

Social Media Teaches a Teacher

by Cindy Chmielewski

Seven years ago I was diagnosed with Stage 3 IgG kappa multiple myeloma. I started the recommended treatment protocol immediately without asking my hematologist any questions. Unfortunately I stopped responding to my induction therapy after only 3 months. A third drug was added to my chemo cocktail as I prepared to have a stem cell transplant. The stem cell transplant failed to put me into remission. I was devastated and hopeless. I retired from my teaching profession to focus on getting my myeloma under control. Fortunately consolidation therapy after my stem cell transplant and ongoing maintenance therapy has kept me in a very good partial remission for the past several years.

Since my diagnosis I learned how important it is to educate yourself about your myeloma, find support and make sure you are actively engaged on your healthcare team. My learning and support began right here at the Philadelphia Multiple Myeloma Networking Group. The PMMNG gave me the foundation I needed to evolve from being a passive bystander in my healthcare, allowing my doctors to make all the decisions about my treatment plan, to an empowered partner.

In addition to attending the monthly PMMNG meetings, I also used social media as a source of education and support. I joined several online patient communities such as Smart Patients (previously known as ACOR), the Myeloma Beacon Forum and several closed Facebook Groups. In these patient communities I learned from the other group members and hopefully they learned something from me. I also listened to podcasts produced by CureTalks and the Myeloma Crowd during which doctors were interviewed about their research. Eventually I was asked to be a regular panelist on these shows. I watched countless teleconferences/webcasts on living with myeloma and subscribed to YouTube channels that were broadcasting myeloma videos. I also discovered Twitter as a source of real-time myeloma information.

Each year at the annual meeting of the American Society of Hematology (ASH), tens of thousands of hematologists from around the world gather together to learn from each other and to share the latest research being done in the field of myeloma and other blood disorders. I have been privileged to attend these meeting the last few years as a patient advocate representing the International Myeloma Foundation. I was part of their social media team sharing real time myeloma updates from the meeting via Twitter, Facebook and blogging.

This year I will attend ASH once again. In addition to being part of the IMF Patient Advocate team I will also be a presenter at the conference. I was asked by the Communications Committee of the American Society of Hematology to be part of a specialist interest session entitled “Social Media for the Hematologist.” I will be sharing the patient perspective during a panel discussion on how oncologists can use Twitter to educate patients and to promote conversations that might lead to a positive impact on patient outcomes.

Here is the program description:

Social Media for the Hematologist,
Sunday, December 6, 11:15 a.m. – 12:15 p.m.

CHAIR: Joseph Mikhael, MD, Mayo Clinic, Scottsdale, AZ

SPEAKERS:

Michael A. Thompson, MD, PhD, ProHealth Care Cancer Center, Waukesha Memorial Hospital, Waukesha, WI: Introduction to Social Media and Medicine
Cindy Chimielewski, Patient Advocate, Lawrenceville, NJ
Navneet Majhail, MD, Cleveland Clinic, Cleveland, OH
Laura Michaelis, MD, Medical College of Wisconsin, Milwaukee, WI
Jeffrey Szer, MD, The Royal Melbourne Hospital, Melbourne, Australia
Amber Yates, MD, Baylor College of Medicine, Houston, TX

Panel Discussion: USING TWITTER TO ENHANCE HEMATOLOGY RESEARCH AND PATIENT CARE

Social media is increasingly becoming recognized as an important and valuable means of communicating advances in science and medicine. Perhaps one of the most impressive displays of the utility and power of social media in this context is at medical meetings. For example, at the 2014 ASH Annual Meeting, more than 3,000 users, many of whom were attending the annual meeting in San Francisco, posted more than 18,500 tweets using the designated “‪#‎ASH14‬” meeting hashtag. The goal of this session is to educate attendees about how the use of social media can be professionally beneficial. The session will offer basic guidance about how to use Twitter as well as some case studies on how Twitter has been successfully used in medicine. The session will also feature a panel discussion focusing on how professional hematology research and clinical communities can use Twitter effectively to promote conversations that might lead to a positive impact on patient outcomes. A question- and-answer session will follow the panelists’ presentations.

I am extremely excited to learn the latest breaking news in the care and treatment of myeloma at this year’s ASH. I think immunotherapy will be a hot topic. You too can find out the news in real time by following the meeting hashtags on Twitter. Hashtags to follow are ‪#‎ASH15‬ ‪#‎IMFASH15‬ ‪#‎MMSM‬ You can also follow my Twitter feed: @MyelomaTeacher