Monday, November 7, 2011

IMF Raleigh-Durham Regional Community Workshop at UNC

On Sunday, October 30th I was able to attend my second International Myeloma Foundation (IMF) Regional Workshop. It was held at UNC's beautiful Rizzo Conference Center at Kenan-Flagler Business School in Chapel Hill from 8:30-2:30.

Unfortunately due to his inability to sit, EZ could not join me for this VERY informative and helpful workshop. The IMF does a top notch job in choosing a venue, providing delicious snacks and meals, bringing in top professionals in the the world of Multiple Myeloma, and giving us access to new materials. I know Ernie would have loved to 'sit' under the teaching of  Dr. Robert Kyle from the Mayo Clinic and Dr. Christina Gasparetto from Duke (his oncologist!).

What a distinguished man Dr. Kyle is, with the kind of calm, clear voice you could listen to forever. He has the rare ability to teach very difficult, scientific concepts in a way that a novice can somewhat understand. As he taught "Myeloma 101" and "Options at Relapse" I found myself writing furiously so as not to miss a word he said! 

In addition to discussing transplant eligibility, classification of Active MM, survival rates, and response to treatment, here are a few facts shared by Dr. Kyle:

1. The incidence of MM is 4/100,000 in Caucasians and 8/100,000 in African-Americans. Surprising...
2. There is usually a price to pay for treatment in the form of adverse events such as neutropenia, anemia, GI problems, fatigue, pneumonia, and peripheral sensory neuropathy. One patient suffering from PN put it this way..."I'd rather be here with numb feet than not!" Very true!
3.  There are more than 100 novel agents now in clinical trials. Dr. Kyle is impressed with Pomalidomide and Carfilzomib.
4. There is no link between the polio vaccine given in the 1950's and multiple myeloma.

Dr. Gasparetto spoke next on "Options at Relapse". She explained what relapse is, what treatment options one might have, and important things to consider. Studies using Carfilzomib and Pomalidomide in relapsed MM showed a great response. Patients should seek out such clinical trials and make life as normal as possible under the circumstances. LET OTHERS HELP YOU. Participate in healthful activities - regular exercise, proper rest and a healthy diet. 

Here are some of the materials that were made available to workshop participants:

Many, many thanks to the IMF for providing this very informative, free workshop. EZ and I will be digesting much of this material for a long time to come. There is still so much to absorb and learn about the blood cancer that invaded our lives 22 months ago.


  1. 4/100,000!?! That is so much rarer than I though it was. My goodness.

    Thanks for sharing what you learned. So glad that you are "the smart patients" as Dr. Kritz has always called you. Love you both!

  2. Linda, you do an outstanding job "sitting in" for me/us at these conferences. I appreciate you not only attending the sessions, but also taking great notes and then blogging about them. Duke and the IMF do a great job sponsoring these events, providing extensive resourses for anyone that would like to attend and get a deeper understanding of Multiple Myeloma and it's treatments. We are indeed blessed to be in close proximity to Duke and UNC. It is always encouraging to hear about the significant and varied developments underway in the battle with MM. Thank you again for participating in this conference.

  3. How great that there is this information and what a gift he has for teaching it. It really seems like God put all the right people directly in your path!