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Reflections about this year's ASH

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I had some extra time this morning to reflect on this year's ASH while sitting at the Atlanta airport, waiting to board my flight back to Tampa.

I have the extra time because for once, everything went right this morning on the way to the airport. The normally impossible rush hour traffic parted for my cab like the Red Sea. I don't know if you have ever flown through Atlanta, but security here is the worst!

The lines are so long, they even run narrow cattle lines out into the shopping area atrium. But not today. Today I walked right past the zig-zagging security maze, around two corners and down the normally packed bottle-neck leading to the screening area.

It's a miracle! I made it through security and out to my gate in record time. Ever notice how that NEVER happens when you are in a hurry?

This morning I shared a cab on the way to the airport with my good friend, Cindy. Cindy's Twitter handle is @MyelomaTeacher. She actually won an award as one of the five favorite Tweeters at ASH. People were coming up to her because they recognized Cindy's picture from their Twitter feed!

Like me, Cindy is a myeloma support group leader, here to help the IMF get the word-out to patients and caregivers about this year's meetings. After all, an informed patient is a safe, longer lived patient!

We hugged and said good by, I grabbed something for breakfast and settled-in to write.

Yesterday I attended oral presentations featuring data about a dozen new drugs or drug combinations. I read abstracts about a dozen more. And all look promising.

The way I see it, you can look at this year's ASH two ways. First, you can play the odds. Something good is bound to develop when so many researchers are working so hard on so many different myeloma therapies. This is sort of the, "Throw enough at the wall and something will stick." approach.

Playing the odds. There must be a genuine breakthrough drug hidden among all of that research, right?

Maybe. OK, probably. I'm leaving ASH hopeful and energized!

But a myeloma patient who's running out of options--or a battle tested and cynical myeloma patient/writer like me--could spin all of this a different way.

Saturday on my daily blog I wrote about a presentation I attended featuring one of Mayo Clinic's best and brightest, Dr. Vincent Rajkumar. Dr. Rajkumar is traveling down a myeloma therapy road less traveled. In a time when most myeloma docs believe hitting myeloma hard up-front, Dr. Rajkumar is still willing to consider a less toxic incremental approach.

I was surprised to learn that Dr. Rajkumar, and many of his collegues, still prescribe the simple combination of Revlimid and dexamethasone for low-risk (also often referred to as standard-risk) newly diagnosed patients.

That's the same induction regimen that I was prescribed when I visited Mayo Clinic almost six years ago. How is that possible? All of these new drugs and nothing has changed after six years?

See what I mean? The myeloma world is full of promise. Kyprolis has just been approved, and pomalidomide (Actimid) should soon follow--with a dozen other assisting, combination therapies waiting in the wings.

Great! I saw a lot of progress being made this year at ASH. Baby steps on the way to adding a half dozen or more drugs to our specialists' arsenal in the next year or two.

But that said, the more things change the more they stay the same! Patients are still being pushed to transplant, and the wide gap between the practical and theoretical won't budge.

That's one reason that we were all here this weekend. To help doctors and researchers remember that behind all of the charts and graphs and abstracts are real patients--and to give the theoretical a nudge.

Feel good and keep smiling!


Don Wright helped save my life!

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At the IMF International Journalist Workshop here in Atlanta this evening, I learned that myeloma survivor, Don Wright from St. Paul, Minnesota, had just completed his goal of running marathons in 50 different states--all since he was diagnosed eight years ago.

Good for you, Don! But as impressive as Don's public achievement seems, it pales in comparison to helping save a life--mine.

Don was the first multiple myeloma survivor I met following my diagnosis back in 2007. Don and his lovely wife and daughter invited me to join them for lunch at one of the first IMF Patient/Family Seminars.

At the time I was lost. Utterly and totally lost. How was it possible that an otherwise healthy, 51-year-old could be dying of bone marrow cancer?

Don calmly reassured me as I rattled-off questions with incomprehensible speed. How long had he been living with multiple myeloma? Did he have bone pain like me? What therapy was he on? Did it ever get any better?

By the time we finished our salads and started our main course, I had already started to relax. Don spent almost an hour with me that day, quietly yet confidently "talking me down."

But it didn't stop there. Don suggested I visit a nearby myeloma support group with him the next week. In person, by email and over the phone, Don helped me learn more about my cancer--and how to emotionally cope.

I'm happy and excited for Don on so many levels.  To achieve such an ambitious goal must be incredibly gratifying for him and his family. The fact that his achievement will help raise awareness and funding for myeloma research is icing on the cake.

But Don's most important achievement? Helping fellow patients like me see that their lives don't have to end when the doctor says, "I'm sorry, you have multiple myeloma."

For that I will always be grateful. Feel good and keep smiling! 


A Patient's Journey: They're Talking About ME!

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Attending an event like the American Society of Hematology (ASH) meetings is exciting and overwhelming. Physicians, researchers, nurses and drug company reps all racing from building to building. And it is a massive building. Five massive floors all connected by escalators and crosswalks. Next door sits the Georgia Dome, the crown jewel of one of the largest convention centers in the world.

Hope and promise ooze from every overcrowded meeting room. I have already run into people from France, Switzerland, Argentina, Spain, Canada and dozens of different U.S. cities, too. Watching over 400 clinicians and researchers line-up and wait to eat a brown bag lunch and sit on small, cramped chairs in order to hear the IMF's Dr. Durie and other top myeloma experts speak was amazing!

I'm one of ten myeloma patients and caregivers working with the IMF at this year's ASH. Our job is to use social media to help communicate and connect with our myeloma brothers and sisters; to pass along the exciting news, sites and sounds from this year's ASH in Atlanta.

This morning while I sat listening to Italy's Dr. Antonio Palumbo, I couldn't' shake an almost surreal feeling of irony. On one hand, I'm fascinated by all of the data and myeloma research. I'm hopeful as I gaze across a room that seats 6000 people and it is half full at 7:30 am on a Saturday morning. These people are dedicated. They work hard and care about their patients.

But sitting there, looking at all the graphs and charts and overall survival numbers, reality suddenly jumps-up and bites me in the ass.

These people are talking about me. My life living with a yet incurable cancer. And they are talking like I'm not in the room. Cold, matter of fact statistics remind me that I could die soon.

Or maybe not!  I snap out of my momentary funk long enough to hear how much longer some patients are living after being given therapy X,Y and Z. How much longer?  The Mayo Clinic's Dr. Rajkumar says up to a decade or more. Now that's progress!

Suddenly I'm back to my annoyingly optimistic self. RVD side effects?  No big deal!  And if I'm I'm tired and dragging, I'll take a nap! 

ASH is an important, amazing event. I'm just glad I'm here to share it with all of you!  I'll worry about tomorrow tomorrow.

Feel good and keep smiling! 


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This page is an archive of recent entries in the Pat Killingsworth category.

Michael Tuohy is the previous category.

Paula Van Riper is the next category.

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