An Impressive, Yet Unlikely Prelude
Third in ASH 2014 Series
by David Wallace
As a prelude to the American Society of Hematology conference I attended the MPN Heroes Awards presentation. Zhenya Senyak, a friend and fellow patient/publisher of MPNforum magazine, called in a quietly enthusiastic tone informing me he was an award winner. After a heartfelt “congrats man, that’s awesome, very happy to hear….!!” the good news continued when he unexpectedly offered me an invite to be his guest to the MPN Heroes Awards and I graciously accepted.
The Heroes event was scheduled the night before the start of ASH, so the timing was spot on. Plenty of coverage on ASH from our fellow publishers, as well as PV Reporter video interviews with Dr Heinz Gisslinger, A Pioneer in Treating MPNs with Interferon….Dr Richard Stone, Dana Farber Cancer Institute Discussing the 95 Gene Rapid Heme Panel and ASH 2014 Series Coverage / Summary.
So the point of this story is not about ASH or the Heroes Awards…..it is more about a memorable shuttle journey, a chance meeting with some really cool new friends and a glimpse of self discovery.
Now before I shift gears, I would like to thank Zhen for the guest invite, showing me the ropes around ASH and giving me a birds eye view into “60 minutes” style, hard nosed, investigative reporting….appreciate all the above man and glad to see you finally got recognition for all your hard work! Shifting into second gear…
The Mysterious “King George”
Upon gathering my luggage, which thankfully landed in San Francisco instead of lost in oblivion in some far away land, we boarded the shuttle bus. The shuttle that treacherously weaved us through the the busy, bumpy, hilly streets of San Francisco commandeered by a freshly recruited driver who accidentally took us the wrong way on a one way street….yikes! As the ride progressed towards the SF Hilton (our digs for 2 nights of a 6 night stay), we passengers began to chat.
Much to my surprise an MPN Hero, Kathy Vogt, caretaker for her husband Gary, a Myelofibrosis (MF) patient and their 2 guests were on board along with a quiet, older gentleman dipping unassumingly under a ball cap, listening intently and announced only as “King George.”
Fears Put to Rest
Honestly, I had some initial trepidation heading into my first ASH conference, as 3 interviews were on tap with world renowned hematologists and researchers and this was unchartered territory for me. I was a former software sales exec by trade who happened to build a really cool website AND be a PV patient, but no “real live” reporting skills anywhere on my resume.
I introduced myself as David Wallace – “The PV Reporter guy” and Gary immediately chimed in “oh yeah I was just on your website last night and flipped one of your stories to my Flipboard” (an online collection of news you are interested in). The fact he actually knew about PV Reporter was reassuring. Thankfully I knew about Flipboard, ’cause anything being flipped your way is not normally a good thing!
Gary and his “fireball advocate” wife Kathy began sharing details of the difficult journey they had endured – doctors unfamiliar with MF, white blood cells out of control, a 2 week wait for an appointment, test results without explanations, pulmonary issues, all culminating in a traumatic ER visit/hospital stay and a splenectomy to boot. Kathy got directly involved in Gary’s medical care and recruited a whole new team of doctors, insuring her husband received the best care possible. She is a caregiver who has “gone beyond the call of just being a wife.” Click here and scroll down to watch Kathleen Vogt’s video. Hopefully our new friends will share their touching story in detail with PV Reporter in the future….so many lessons to be learned by sharing our journeys.
Frustrating experiences I can relate to firsthand, “all indicative of a sometimes broken medical system at the local level that many MPN patients must endure.”
We discussed the latest MPN drug trials and I shared a slice of my PV journey, including details of how I persuaded my local heme to monitor me on Pegasys, going against his strong recommendation for Hydroxyurea (HU). As we shared our respective stories, a common bond of brotherhood was born.
Patient Educates Doctor
When I announced Jakafi had just won FDA approval for PV, “King George” emerged as a hematologist and said “I wasn’t aware of that.” I proceeded to educate him on low dose interferon (Pegasys, IFN2a) for PV. His clinical experience with interferon was clouded by the all too familiar “the side effects are far too intense,” referring to the “old school” high dose, daily injections of (Peg-Intron, IFN2b). This is a common view among local hematologist, many are not aware that Pegasys is being used to treat MPNs . We continued to discuss a few new developments in the MPN world.
After wrapping up a pleasant exchange, he prepared to get off the bus….”King George” announced he “learned more in our 1 hour patient discussion then he had in 32 years attending ASH.” My pre-conference jitters were immediately put to rest and at that point I knew I was right where I belonged.
A few extraneous points:
- Our hematologist shuttle companion was staying at the King George hotel, we exchanged business cards and he was really quite cordial.
- The four night stay during ASH was at my own expense, henceforth a switch to this far more affordable (and less scenic) hotel, very good service with a personal touch and rooms that were spiffy clean nonetheless.
- I found the MPN Heroes event to be an uplifting experience.
- Stay tuned for exciting new developments with PV Reporter in 2015.