THE ADVENTURES OF BEXXAR BOY

How persistence and lucky underwear

helped me through a cancer diagnosis
••••••••••••••••••••
TL HINES | APRIL 18, 2009
LIFE IN B.C. TIMES (BEFORE CANCER)
LIFE IN B.C. TIMES (BEFORE CANCER)
LIFE IN A.D. TIMES (AFTER DIAGNOSIS)
LIFE IN A.D. TIMES (AFTER DIAGNOSIS)
• Stage 4 Follicular NHL: about 5% bone
marrow involvement.
• Considered “incurable.”
• Median Survival: ~10 years.
• Scary. But…I didn’t understand the
data. (More on that later.)
BLAME (OR THANK) THE LIVER
 THE LYMPHOMA TOUR
• Scans, biopsies and tests. Oh, my.
• Web research: Do NOT Google
“lymphoma survival rates.”
• Five oncologists. Five opinions.
 TREATMENT OPTIONS? YES. ERR…NO.
• Chemo: R-CHOP, R-CVP, Fludarabine.
• Single-agent rituximab.
• Radioimmunotherapy.
• Watch & Wait (Watch & Worry).
• Clinical trials: new agents, vaccines.
• Big question: Treat now, or treat later?
 FIRST-LINE BEXXAR TRIAL
• 76 FNHL patients (Stages 3 & 4).
• Overall response: 95%.
• Complete response: 75%.
• Median PFS for CR: 9.2 years.
• Only three relapses after 8 years.
 DANGER, WILL ROBINSON
• MDS, AML.
• Hypothyroidism.
• Not much long-term data.
• Oh, and the little matter of Bexxar not
being FDA-approved for first-line
treatment.
 I CHOOSE YOU, BEXXAR
• Rationale: Tolerability, ease of
treatment, trial data, family
considerations, ability to be my own
night light after radioactive dose.
• Clinical trial? Bzzzt.
• Tony becomes a defense attorney:
might this have curative potential?
 BEXXAR, OR BEXXAREN’T?
• Work with Billings Clinic and BC/BS on
approval.
• Wait a minute: you need that high-
energy columnator.
• Maybe just go with Zevalin vs. Bexxar?
• Community Medical Center in Missoula
to the rescue.
BEXXAR BOY’S UNIFORM
BEXXAR BOY IS BORN
BEXXAR BOY IS BORN
BEXXAR BOY IS BORN
 THE CONTINUING ADVENTURE
• Complete response in three months
(Faster than expected)
• Continued NED scans July 08, Jan 09
• Only real side effect: hypothyroidism
(treated with syntheroid)
 CURED BY CANCER?
• In many ways, the cancer journey has
made me a better person.
• Value of relationships; thankful for
what you have; let the little stuff go.
• Lost 40 pounds (so far), running 20+
miles a week; training for a half-
marathon. Would I be otherwise?
 WHAT I LEARNED
• Danger of statistics: survival, cure, etc.
• When you hear “no,” go to plan B. Or C.
• Different strokes for different folks.
• Healthcare decisions are business
partnerships: choose partners wisely.
• When you hear “no,” go to plan D. Or E.
• Make a choice: find the positive.
 WHAT I LEARNED: THE SEQUEL
• We need to encourage physicians to
recommend clinical trials.
• Patients need to be more active, rather
than passive, in their health care.
• Our health care system is neither
perfect, nor perfectly awful.
MORE BEXXAR BOYS AND GIRLS NEEDED
• Bexxar/Zevalin are underused. Why?
– Oncology/radiology handoff.
– CMS reimbursement issues.
– Misconceptions: cost, marrow damage,
secondary cancers.
• So: Make friends with oncologists. Tell
them you love them and want to help.
 THANK YOU. THANK YOU VERY MUCH.
• More than you ever wanted to know:
www.tlhines.com/lymphoma