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This Year's Support Group Leader Summit in Dallas Truly Changed My Life!

patkillingsworth_app.jpgEnergizing. Life changing. Hopeful. All adjectives that can be used to describe my experience at this week's IMF Support Group Leader Summit in Dallas, Texas.

I must admit that I was reluctant to attend this year's meeting. I had lots of excuses. I had just returned from speaking to a pair of support groups in L.A, and I knew I was returning to California again this Thursday to speak to a group in Orange County, so I'm way too busy. I'm only one of three co-founders of our Nature Coast (Florida) Multiple Myeloma Support Group - and probably the least active at that. Or how about his one: my platelet and white blood counts were very low and I wasn't feeling well. Pick an excuse, any excuse.

Thank God the IMF's Support Group Director, Robin Touhy, encouraged me to go!

It was an amazing experience! Dozens of support group leaders from all over the U.S. and Canada attended, too. Some were first-timers, like me. Others had attended for many years.

But we had two important things in common.  We were all myeloma patients or caregivers, and we all volunteered our time this weeke
nd--and each month--to give our time and help our fellow survivors.

I was impressed with updates provided by IMF Chairman and Co-founder Dr. Brian Durie and a half dozen or more medical experts. Highlights included in-depth presentations about state-of-the-art advances in imaging, treating high-risk myeloma patients, and a series of updates by leading medical spokespersons from Millennium, Celgene and Onyx pharmaceuticals companies.

I was surprised to learn that Onyx, makers of the newly FDA approved proteasome inhibitor, Kyprolis, is already testing a similar oral chemotherapy drug. Moreover, I know from first-hand experience how exciting Millennium's new Sub-Q administration method for Velcade can be.

After taking Velcade by IV for only ten weeks, I was close to being forced to discontinue my treatment six months ago. The peripheral neuropathy was simply too intense. But about that time, my myeloma specialist switched me to Sub-Q Velcade.  It was like a miracle! My neuropathy didn't get any worse, I felt better and I spent far less time at my local infusion center, too.

Additionally, Millennium is also close to submitting its new version of an oral proteasome inhibitor, MLN9708.

But as exciting as all of this was, the human side of the gathering made the biggest impression on me.  What a wonderful, selfless group of dear friends I made this past weekend!

Even though it was my first Support Group Summit, I knew a number of the group leaders from visits I had made around the country to their groups to share my story with their members. And I knew most of the IMF staff from our trips together to American Society of Hematology (ASH) meetings in New Orleans, Orlando and most recently, San Diego.

We all worked hard, spending the weekend learning and sharing ideas together.

Sure, the pri
mary goal of the Support Group Leader Summit was to bring back lots of ideas and information to our respective support groups.  But in one short weekend, I was able to turn a dozen former acquaintances--along with more than twice that many survivors, caregivers and IMF team members that I just met--into what I hope will be life-long friends.

It was an experience I will never forget!

Feel good and keep smiling!  




Pat,I love your blog and I agree with you totally the summit was amazing. I look forward to having you come speak to our group in the near future. Teresa Martinson

I am with you !! It was one of those myeloma events you do not want to miss! My husband Jeff & I are so glad we went this year, and sorry we have missed a couple in the past. We went home with more MM knowledge, inspiration, and hope for ourselves and our support group.
Thanks for your blog, you explain it all!!
So glad we got to meet & visit with you, as well as all the other folks we had the pleasure of spending time with at the IMF SGLS!
Kathy Cartwright
MO/IL Multiple Myeloma Support Group

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