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" I Choose to Live in the Moment and to Make Lasting Memories"

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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

1 Comment

This sounds like a great experience for all MM patients. Thank you for representing us all!! I also agree with you about donating tissue samples,etc to help further Myeloma research, and to explore clinical trials as options in ones treatments. I have followed my own advice in both cases. I do feel the clinical trials I was on helped save my life as well as many dollars in our bank.
Thank you & all the MM patients, and the IMF for keeping us posted on all the new information coming out for 2014, it is all very Hopeful!
Knowledge is power!
** Kathy Cartwright
MO/IL MM Support Group

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