[AMN107] Diagnosis

[Ruth McIntosh]

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

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[Rob]

Welcome to the group Ruth. We are hoping to get some discussion here

on the trials.

 

Rob

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