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Thanks for the Memories

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New Orleans, LA December 10, 2013 - It's not happiness that brings you gratitude, it's gratitude that brings you happiness. Today I am a very happy girl. As I sit in the Louis Armstrong Airport waiting for my delayed flight home to Philadelphia from the American Society of Hematology's Annual Meeting (#ASH13 on social media) I am reflecting back on my experience. I have a lot for which I am grateful.  

I am grateful for the educational grant that enabled the International Myeloma Foundation to bring 12 patient advocates from across the United States to the American Society of Hematology's Annual Meeting.

I am grateful that IMF asked me to be one of those patient advocates this year and report from #ASH13.

I am grateful for the progress that has been made in treating myeloma in the last decade; because of these advances I am well enough to travel alone halfway across the country five years post-diagnosis. 

I am grateful for the many discussions I had with my fellow advocates during our time in New Orleans. These conversations both formal and informal enlightened me on treatment options, clinical trials, side effect management, advocacy, and the best place to get a muffuletta. 

I am grateful for all the researchers that are bringing new treatment protocols and drugs to clinical trial. The passion I felt during the presentations of medical research abstracts and at the satellite events held throughout the conference was contagious. 

I am grateful to everyone who has helped fund research, from the individual patient who held a grassroots bake sale to all who lobbied Washington to restore government funds for medical research.

I am grateful to my fellow myeloma warriors who have participated in clinical trials; without them we wouldn't have made any progress in our war against myeloma or have research abstracts to present.

I am grateful for the education the International Myeloma Foundation has provided me, from the new patient resource packet I received in the mail days after my diagnosis to the ongoing educational webcasts. The IMF hosted 3 live webcasts from #ASH13 this week and there are several recorded #ASH13 interviews posted on their website.

I am grateful for social media that has allowed me both to learn from others and share what I learned through Twitter - @MyelomaTeacher #ASH13IMF (I was in the top 5 influencers at #ASH13), IMF blogs, and a Patient Power interview.

I am grateful for my family and friends who continue to support me in my efforts to be a patient advocate.

This list could go on and on, but it's just about time to board my flight. 

I plan on using what I learned to help others at my local in-person support group, in the several online communities of which I am a member, in my mentoring of newly diagnosed patients, by participating in myeloma related webcasts, and through continued engagement in social media.

Remember to use the following link to get all the myeloma highlights from #ASH13.               http://myeloma.org/IndexPage.action?tabId=0&menuId=0&indexPageId=452&parentLinkId=7690&categoryId=0 

Goodbye New Orleans, but thanks for the memories!

Cindy Chmielewski
AKA @MyelomaTeacher

There is no better place to host a medical convention than New Orleans.  The sights, the sounds, the smells and the people invigorate you. I have the best of both worlds here. During the day I am surrounded by the giants of hematology attending the annual meeting of the American Society of Hematology (ASH).  I feel like an anxious child at a theme park patiently waiting to see the "characters" that I respect and admire. And when I see one of those special people I want a picture as a souvenir.

 Today I had my picture taken with the @MayoMyeloma tweeters that I faithfully follow (@VincentRk and @myelomaMD) and shook hands with the much respected @BrianDurieMD.  I still have a list of other "characters" I would love to meet and shake hands with and just maybe I will be able to sneak in a quick photo shoot  for my scrapbook. 

Friday I listened intently as the presenters defended their points of view on critical issues in myeloma at International Myeloma Foundation's Satellite Symposium. But at night I celebrated life with my friends and fellow myeloma survivors. We eat,  drink, listen to some good music and enjoyed each other's company immensely. I cherish the time that medical science has afforded me.  I choose to live in the moment and to make lasting memories. 

While at ASH 2013 I have learned that myeloma is a heterogeneous disease and there is not any one-size-fits-all treatment option.  I have learned that new definitions of myeloma need to be developed as more is being discovered about the various sub-types of this disease.  I have learned that not all myeloma specialists agree on what treatment options are the best, but they do challenge each other to defend their opinions.  

What's the role of maintenance therapy?  Do we need to transplant early or can we wait until the first relapse? Do we use early integration of new therapies in the salvage setting? When should we treat a patient with smoldering myeloma?  Should Melphalan be used as part of the induction therapy for elderly patients?  Check out the event slides to see some of the varying opinions. 

As I listened to the point-counterpoint presentations I realized how important it is to be an informed patient. I know that I must educate myself so that I can ask questions and become a part of my medical decision making team. I also know I must respectfully ask my doctor to defend his recommendations for me, to explain what my treatment goal is and to ask further delving questions. 

I am fortunate that I have this opportunity to attend ASH and listen to these debates and presentations in person. But it's nice to know that patients who can't attend ASH can view some of these same debates and presentations live-stream, follow twitter feeds, read patient blogs and follow updates from various publications. http://myeloma.org/IndexPage.action?tabId=0&menuId=0&indexPageId=452&parentLinkId=7668&categoryId=0&gParentType=nugget&gParentId=1&parentIndexPageId=1 

Sitting in today's session I also realized what my role as a patient should be in finding a cure for myeloma.  Answers about what the best treatment option is for a particular situation cannot be found outside of clinical trials. So my first role as a patient advocate is to enroll in appropriate trials and encourage others to do so too!  This may take some educating.  Cancer patients need to learn how cancer trials are designed so they feel more at ease in participating in one. I also feel it is my responsibility to give tissue samples and share my data with others. 

It is past midnight and tomorrow is the official opening day of #ASH13. I must get some sleep so I will be ready to take in an share what I will learn in tomorrow's sessions.  Sweet dreams! 

-- Cindy Chmielewski

The IMF at ASH 2013

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