ASH13


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. I feel like an anxious child at a theme park patiently waiting to see the "characters" that I respect and admire. When I see one of those special people I want a picture as a souvenir.  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 afternoon I listened intently as the presenters defended their points of view on critical issues in myeloma at International Myeloma Foundations's Satellite Symposium. Then on Friday night I celebrated life with my friends and fellow myeloma survivors. We ate, drank, listened 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.

 

On Friday ASH13 hadn't officially begun, but I already learned a lot. I have been tweeting from @MyelomaTeacher sharing my experiences from a patient's perspective. I have learned that myeloma is a heterogenous 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 these varying points of view. http://tinyurl.com/ox8aao8

 

As I listened to the point-counterpoint presentations on Friday 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 doc 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 #ASH13 as a Patient Advocate being sponsored by the International Myeloma Foundation. It's awe-inspiring being in the same room as the top myeloma specialist debate and make presentations. It's also nice to know that patients who can't attend #ASH13 can view some of these same debates and presentations live-stream, follow twitter feeds, read patient blogs and follow updates from various publications. Here is the link to the IMF's social media team coverage. http://tinyurl.com/q3wedgc

 

 

As I sat in Friday's session I contemplated 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 can not 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.

 

I am anxiously awaiting Myeloma Monday even if it means boarding the shuttle at 6:15 AM  to get prime seats for the day's events.   I am falling asleep tonight feeling hopef


ul and thankful.

 

Cynthia Chmielewski

@MyelomaTeacher

Dx 2008 with Stage 3 Multiple Myeloma

Currently in a VGPR

 

 

Dr. Ken Anderson from Dana Farber and Cindy Chmielewski

 

 

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