HCL and Recurrance
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Submissions to "Patients' Stories" cannot be verified for their accuracy.  They do not necessarily represent validated medical research.  The reader should understand that these stories represent only the opinions of the authors and not the Hairy Cell Leukemia Research Foundation.

THE FIRST TIME I WAS DIAGNOSED WITH HCL WAS SEPTEMBER 1995 AND HAD TREATMENT (2CDA) IN NOVEMBER 2004. MY ONCOLOGIST TOLD ME I HAD LEUKEMIA AND THAT IS BASICALLY THE LAST THING I PAID ANY ATTENTION TO UNTIL MY WIFE  AND I REACHED THE CAR AND SHE EXPLAINED THE CONVERSATION THAT TOOK PLACE WITH THE DOCTOR.

 

I REMEMBER BEING AT FOOTBALL PRACTICE AT FLETCHER HIGH SCHOOL AND TELLING ONE OF THE COACHES ABOUT EVERYDAY HOW FATIGUED I FELT. I NEVER PUT THE TWO TOGETHER. THE TREATMENT WENT WELL AND I SUFFERED VERY FEW SIDE EFFECTS AND RETURNED TO A NORMAL LIFE AFTER A VERY SHORT TIME.OF RECUPPERATION.

 

THE SECOND TIME AROUND OCCURED DECEMBER 2004. I SPENT MOST OF THE MONTH OF DECEMBER IN THE HOSPITAL AFTER ONLY EXPECTING TO BE IN FOR A WEEK(THE NORMAL TIME FOR 2CDA INFUSION). I WS VERY LUCKY TO SURVIVE. I CAME HOME DECEMBER 23 2004, BUT WAS VERY ILL. THE THIRD DAY INTO THE TREATMENT THINGS BEGAN TO GO WRONG. I RAN A TEMPERATURE OF 105 TO 106 FOR ABOUT 5 DAYS, HAD KIDNEY FAILURE, CONGESTIVE HEART FAILURE, PNEUMONIA, 9 BLOOD TRANSFUSIONS, AN ANTIBODY REACTION WHICH MADE MY BODY SWELL TO TWICE IT'S SIZE AND BURNED MY OUTER LAYER OF SKIN, WHICH PEELED OFF LIKE A BAD SUNBURN. I ALSO WAS UNABLE TO WALK BECAUSE OF SEVERE CHEMO INDUCED ARTHRITIS. I WAS PUT ON PREDNISONE FOR THIS AND AM STILL ON IT. AFTER SIX MONTHS MY WHITE CELL COUNT IS IN THE NORMAL RANGE, BUT THE DOCTORS THINK THIS MAY HAVE SOMETHING TO DO WITH THE PREDNISONE WHICH MAKE WBC RISE. UNLIKE THE FIRST TIME MY RED CELL COUNT HAS PLUMMETED(RBC 2.75, HGB 7.92, HCT.25.1) AND HAVE BEEN TAKING AN INJECTION SIMILAR TO PROCRIT EVERY WEEK, BUT TO NO AVAIL SO FAR. TOMORROW A DECISION WILL BE MADE WHETHER I MUST HAVE BLOOD TRANSFUSION(S). MY KIDNEY FUNCTION IS BACK TO 80%, AND MY ARTHRITIS IS IMPROVING VERY MUCH WITH THE STEROIDS. IF ANYONE OUT THERE HAS HAD A RECURRANCE OF HCL, I WISH THEY WOULD PLEASE CONTACT ME AS I WOULD REALLY LIKE TO KNOW THEIR EXPERIENCES.

 

THANK YOU VERY MUCH,

 

ELLIS A JOHNSON(AGE 65, AGE AT FIRST OCCURANCE 55)