I ALREADY PUT THIS ON ANOTHER THREAD BUT DECIDED I WOULD USE IT TO START A NEW DISCUSSION AND HOPEFULLY MEET MORE FRIENDS AND SUPPORT.
I AM NOT A CANCER PATIENT BUT MY 31 YEAR OLD SON WAS DIAGNOSED WITH CML A COUPLE OF WEEKS AGO. THE DRS THINK THAT HE PROBABLY HAD IT FOR OVER TWO YEARS BEFORE HE WAS DIAGNOSED. HE LIVES BY HIMSELF IN MIAMI AND WHEN HE CAME HOME (DE) TO VISIT IN AUGUST WE WERE ALL AGHAST WHEN WE SAW HIM. HIS PULSE WAS ABOUT 140 AT REST, HIS FEET AND ANKLES WERE SWOLLEN WORSE THEN ANY PREGNANT WOMANS. HE HAD OBVIOUSLY LOST WEIGHT AND YET HIS ABDOMEN WAS DISTENDED.HIS HEARING WAS VERY IMPAIRED IN ONE EAR, AND HE WAS EXPERIENCING SOME PANIC AND ANXIETY RELATED ISSUES WHICH HE WAS TRYING TO SAY WAS THE ONLY THING WRONG.
I AM A MAMA BEAR EVEN THOUGH MY CHILDREN ARE GROWN, AND I BEGGED HIM TO SEE THE DR WHEN HE GOT BACK TO MIAMI. HE DID, BUT THE DR ONLY FOCUSED ON THE ANXIETY SYMPTOMS AND SENT HIM HOME WITH XANAX FOR HIS ANXIETY AND AN ANTIBIOTIC FOR HIS EAR. JUST A FEW DAYS LATER, THE TOP OF NATHAN'S FOOT BEGAN TO TURN RED AND SWOLLEN WITH WHAT APPEARED TO BE AN INSECT BITE. LONG STORY A LITTLE SHORTER, HE WENT TO AN URGENT CARE, SAW A LADY DR THAT REALLY LISTENED AND WAS CONCERNED. SHE TOOK AN EKG, A CBC, GAVE HIM MORE ANTIBIOTICS AND SENT HIM HOME. THE NEXT DAY HE HOBBLED TO WORK AND EARLY AFTERNOON RECEIVED A CALL FROM THE LADY DR. SHE SAID "I NEED TO SEE YOU IN MY OFFICE AS SOON AS YOU CAN GET HERE". HE LEFT WORK AND WENT TO THE OFFICE.
I WAS AT MY DAUGHTER'S HOME HELPING WITH MY GRANDBABIES WHEN HE CALLED ME AND SAID "MOM, I HAVE LEUKEMIA. THEY SAID I HAVE TO GO TO THE HOSPITAL, BUT I DON'T WANT TO GO UNTIL YOU GET HERE." THAT WAS AROUND 2:00, FRIDAY AFTERNOON, SEPTEMBER 2, 2011. I ONLY HAD A COUPLE OF OLD OUTFITS AND WORNOUT SANDLES WITH ME AT MY DAUGHTERS, BUT BY 8:00 P.M. I WAS ON A ONE WAY FLIGHT TO MIAMI.
THE NEXT MORNING WE WENT TO THE EMERGENCY ROOM AT UNIVERSITY OF MIAMI HOSPITAL. THEY COULDN'T BELIEVE HOW BAD NATHAN'S VITALS WERE AND HE WAS STILL WALKING AROUND. HIS WHITE BLOOD COUNT WAS WAY OVER 600K, HIS B/P WAS HIGH HE COULD BARELY BREATHE, HIS FEET WERE GIGANTIC AND HIS PULSE WAS 150 LAYING IN BED. NEEDLESS TO SAY, HE WAS ADMITTED. SINCE IT WAS LABOR DAY WEEKEND, THAY HAD SOME TROUBLE GETTING TESTS DONE ETC., BUT FINALLY SEVERAL DAYS LATER HE WAS TOLD HE HAS CML IN THE ACCELERATED STAGE. HE IS ON GLEEVEC AND IS NOW HOME. I AM STAYING IN MIAMI TO HELP HIM OUT.
NATHAN IS HOME NOW AND CONTINUING TO TAKE GLEEVEC DAILY. THERE WAS A LOT OF RED TAPE INVOLVED IN GETTING THE CHEMO FOR HIM AT HOME AND HE ACTUALLY WAS WITHOUT IT FOR 3 DAYS. HIS WBC HAS GONE FROM 600K+ TO YESTERDAYS READING OF 190K. IS IT DANGEROUS FOR THEM TO TAKE HIM DOWN SO QUICKLY? HE IS ON 600MG/DAY OF GLEEVEC.
IN HIS "REPORT" THEY SAID THAT HE HAD THE PHILADELPHIA CHROMOSOME IN 95% OF HIS CELLS, BUT THAT THE BLAST COUNT WAS LOW AND HIS BONE MARROW SHOWED A LOW PERCENTAGE OF BLAST CELLS.
IT DEPENDS AN WHICH DR YOU ASK ABOUT BMT. HIS ONC SAYS HE FEELS PRETTY SURE HE WILL NEED ONE AT SOME POINT, WHILE THE TRANSPLANT DR SAYS NO.
IT WORRIES ME TO THINK OF HIM BEING ON SUCH A TOXIC DRUG FOR 30+ YEARS.
I APPRECIATE SO MUCH ALL OF THE ENCOURAGEMENT I HAVE ALREADY RECEIVED AND WILL BE LOOKING FORWARD TO MORE SUPPORT, EXPLANATIONS AND ENCOURAGEMENT.
NATESMAMA (PAT)