Brucecav

Just found and joined this forum, my name is Bruce and I have acute lymphoblastic leukemia Philadelphia Positive  December 2016. 

 

BCR/ABL by PCR was negative for p210 and p190 assays, but was positive for rare e1-a3 variant

 

This is one of the presumptive diseases caused by Agent Orange and cantaminated camp Jejune drinking water.

At the end of 2016 I was experiencing bad pain all over so finally went to the DR he gave me a blood test and found my platelet level had dropped to just 12 and 3 months before was 386. So he sent me to the hospital that same day where I had a blood DR do all the tests.

 

That blood DR said he could not find anything but had a suspension and was discharging me but after I left the hospital I was to come next door to his office for a bone marrow test as they did a better test than the hospital.

I did so after getting home saw two hours later he said I hate to tell you this over the phone but you have Acute Leukemia negative. He wanted me to go same day to the Hershey Cancer Institute and I did. They immediately admitted me to the hospital and the head of the cancer institute came in he was now my Oncologist.

WOW did they fill our heads with info; my wife the retired nurse was with me she was even confused. He said I had about 4 months to live without a stem cell transplant. They started me immediately on IV chemo but did their own bone marrow test. Next day they came in and said my rare forum of Leukemia was Phil positive and required a different treatment. So they switched my chemo. The search was on for a stem cell donor and I stayed in the hospital.

 

Believe it was around 10 to 15 days of chemo and pills then they discharged me pending a stem cell transplant but kept me on Tisigna Sprycell.

Lucky for me my older brother turned out to be a perfect stem cell match and he donated his stem cells.

So I went back into the hospital back on chemo IV to wipe out my immune system and old stem cells. On Feb 22, 2017 I had my stem cell transplant. After around say 10 days I was discharged but had to come in daily as an outpatient. I would get over the next six months daily blood work, I then had over weeks some blood, platelet and nagneasum transfusions.

After say 5 to 6 months I was again admitted to the hospital they thought I had pneumonia, turned out the Sprycell shut down my kidneys they took me off the Sprycell and got my kidneys working again and I was switched to Tisigna Nilotinib that I am still taking.

 

Anyway here it is now past four years and I am still alive but still under treatment so hang in there and never give up.