Cutaneous Lymphoma Foundation
6
A Patient’s Story: AMan in theArena
Dr. Neil Dicker
Orefield, PA
W
egoback in time to
November 2004.
I am 57 years old, ingoodhealth,
practicingdentistry and cruising
along.Then, oneday, Ibecome
awareof apersistent and irritat-
ing rashonmy lower abdominal area.Over the courseof the
next year, the rashmorphs into abody-widenuclear explo-
sion, and Ibecome immersed in skin that becomes an enemy
that destroysmy social life,my ability towork andmakesme
contemplate suicide.After countlessdoctor visits and tests, I
am finallydiagnosedwithSézary syndrome, a formof cutane-
ousT-cell lymphoma (CTCL), and it’s stage 3.The important
point that Iwant to emphasizehere is thatCTCL isdifficult
todiagnose and youmust be your ownbest advocate—never
giveup.
Withmuchpersistence and some luck, Igetmyself under
the careofDr.AlainRook at theHospital of theUniversity
ofPennsylvania.He is adermatologist and a specialist in this
disease, andover thenext number of yearswedevelop an
outstanding relationship. I am treatedwith total skin elec-
tronbeam (TSEB) therapy for over threemonths atTemple
Hospital, photopheresis twodays amonth formany years,
IntronA andB subcutaneous injections everyweek for years,
Leukine injections,Targretin, PUVA and all of the cortico-
steroidointments and creams.Everythinghelps somewhat,
and I hang in there.The lesson is that this is adifficult disease,
and, tobe treated successfully, youmust be treated at a center
which specializes in it.Oneday, onmywayhome fromTSEB
treatment, I saw a signby thehighway—it read as follows:
“Whoever said thatwinning isn’t everythingnever had to fight
cancer.” Isn’t that the truth?
Years pass by slowly and the tests indicate thatmy cancer
is not beingheld in check. I am so tiredof being “thepatient.”
Thepsychologyof endlessmedical visits and awithering-away
processdepressesme. I talk about this tomyphysicians. I read
upon transplants andDr.Rook refersme to anoncohema-
tologist. I listen and contemplate, hesitate, and thendecide to
forge ahead. I am looking for a cure.Adoor and awayout. I
understand that this is about life anddeath. I am as thorough
as possible inmypreparations.
InApril of 2009, Ibegin threemonths of subcutaneous
injectionswithCampath and finish all other treatment.The
Campath injections aregiven tome three times aweek in
the infusionunit ofmy local hospital.MyCTCLgoes into a
complete remission and thebonemarrowbiopsy shows no
signofmalignant cells. I experienceno side effects and then
wait for theCampath towashout ofmy system.Adonor is
located, and I have amatchedunrelated allogeneic stem cell
transplant inAugust 2009. I recover –not uneventfully –but
Idonot need tobehospitalized again. Idonot developgraft-
versus-host disease (GVHD).Months goby, and I remain in
remission. Igrow strong again and feel somuchmorepositive.
Then theunexpectedhappens.
Thegenetic testsdemonstrate that the transplant is falter-
ing.The cancer is in remission, but the integrationof thenew
marrow is havingdifficultygetting established.Thenext step
is planned: adonor lymphocyte infusion. I am afraid, disap-
pointed and sometimes I feel sorry formyself.Aswith the
transplant itself, the results arenot predictable –perhaps Iwill
beOK andperhaps not. Itwill takemonths todetermine, and
Imayneed togo through this process several times. There is
also the chance that Iwill experienceGVHDor even another
bonemarrow transplant.
This procedure is planned forNovember 2010. So the
storyhas yet tobe finished. Sometimesmy lifewith cancer feels
likeTheNeverEndingStory.
ThePolkaDot Jersey is awarded to thebest hill climber
in theTourDeFrance.Thequalities needed arepersistence,
perseverance and courage. I ridemybike thatway and Ideal
withmy cancer thatway. I havemyownPolkaDot Jersey.
And, even though Iboughtmine in a store, inmymind’s eye I
am thePolkaDot Jersey.
LanceArmstrong isquoted: “Pain is temporary. Itmay
last aminuteor anhour or aday,week,monthor a year.But
sooner or later itwill go away and something elsewill take its
place. If Iquit however, it lasts forever.”
Mymessage toCTCLpatients and their families is that
you, too, should try todealwith your cancerwithpersistence,
perseverance and courage. Yoube your ownPolkaDot Jersey!
Neilwelcomes you to contact him at
610.395.6316or
.
ThePatientResourceCancerGuidesare free
publications thatwerecreated toempowerand
preparenewlydiagnosedandnewly restaged
cancerpatients tobecome theirownadvocates.
Now in its fourthyear, thiscomprehensive resourcehelps
thesepatientsand their familiesmap thecancer journey.To
request your freecopyvisitwww.PatientResource.netor
call (816) 333-3595, ext. 26.
