----- Original Message -----
Sent: Wednesday, June 22, 2005 11:56 AM
Subject: [AMN107] Diagnosis
It seems I may be the first to post on the AMN107 site for cmlhope. I
really pray others on the AMN107 drug will also post as I really don't have
anyone to compare notes with.
I was diagnosed with CML on 2/28/04 after being
hospitalized due to severe left shoulder and arm pain which the doc
thought may be the beginning of a heart attack. My WBC was 82000 on
Thursday and an oncologist was consulted. We live in a small town and I
had just retired from a surgery office. One of my "surgeons" came by and
talked with me and gave me more advise and info that any of the other docs
had. By then it was 5PM on Friday and I was being discharged. My
surgeon called a cancer clinic about 65 miles away and had me an appointment for
Tuesday, March 2, 2004 and CML was confirmed by bone marrow. On that day
my WBC was 135000.
Treatment of my CML is complicated by renal
insufficiency. I only have one kidney and it functions at 48%. I was
immediately started on hydrea and Allipurinol to reduce the WBC. When it
was reduced to 11,000 (about 3 weeks), I was started on 400mg Gleevec.
After a couple or three weeks the side effects were so great and the kidney
function went down, so the Gleevec was removed. To make a long story short
we went on and off Gleevec until September when I asked to be referred to MDACC
in Houston, TX. I had also spent 8 days in the hospital the end of May
with an undiagnosed fever.
Dr. Cortes immediately gave me a form of
chemo by IV to improve my kidney function and reduce the Uric Acid which was
extremely high.
I came home and went back 10 days later for another IV treatment for kidney
and was approved for the AMN trials on 11/4/04.
That was a rocky start, too. I started on
1200mg and after 4 days was admitted to the hospital with acute
pancreatitis. After two weeks I was restarted on 800mg the end of
November. When I returned to MDACC on 12/28, I was covered from head to
toe with an itchy rash, so the AMN was again reduced to 400mg and I am still on
it. The 12/28 BMA showed me to me in CCR. I have maintained CCR on
400mg thus far. Side effects of the AMN are itchy scalp, itchy red
rash on upper torso and back that comes and goes and is treated with cortisone
cream to relieve the itching.
I really would like to hear from other AMN107 patients.
Ruth