Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 Hello, Everyone: It has been forever since I have written to all of you! I have been keeping up with all the posts...most of them anyway! I am the QUEEN of side effects for those who do not know me! Dr. Druker considered me " transfusion dependent! " He was not happy with everything I was experiencing. After the ninth transfusion, he requested through Novartis that my gleevec PK level be taken. I began at 600 mg and had lowered the dosage myself with Dr. Druker's blessings after about one year and 4 months or so, to 400 mg. I had every reaction to Gleevec EXCEPT the rash! When the Gleevec PK level came back, I was at a toxic state! I was at 3100 nl...anything in the 500 to 700 range is acceptable...not 3100!!! To make a long story short, I am now on 250 mg. once a day! Most of my side effects are at bay. I still, on 250 mg, get occasional eye bleeds. Everyone is different. however, I remember Dr. Druker explaining my husband and I that there are other options out there. Dr. Druker was thinking about switching me toe Sprycel and decided against it. He wanted to try the dosage reduciton first. He said he did not want to use up an avenue until we exhausted the Gleevec avenue first thoroughly. He is a smart man...I am still on Gleevec and quality of life comes first...Dr. Druker maintains that, too! We are thrilled that I can take a lower dose of Gleevec and still maintain the 500 nl range. Everyone reacts differently. I was written up in Blood magazine by Dr. Druker (of course, they do not use names in the magazine) but Dr. Druker told me about it and I secured a copy from Blood magazine in pdf format. When you go to a specialist, they do know what they are doing!!! As for bone pain and oxo...if the discomfort goes away, you do not become dependent on a narcotic drug...it just minimizes the discomfort. Muscle spasms, they can be caused by potassium deficiency but in my case, Gleevec was robbing my body of calcium. I now take 2250 mg of calcium (Citrical PLUS)a day. Most of the spasms are controlled. However, I noticed that when I do not drink enough water-the spasms like to kick up a storm! Glad to be writing, kicking and being alive! Hugs, Rosenthal dx. January 8th, 2003 Began Gleevec: 4/10/2003 Ceased Gleevec: 4/21/2003 " Rebegan " Gleevec: 4/25/2003 Tranfusion dependent: May 2004-November 2005 Gleevec reduced to 400mg: 8/2004 Gleevec reduced to 300mg: 8/2005 Gleevec reduced to 200/300 alternating days: November 7, 2006 to present day except now I am taking 250 every day now... Still undetectable 9/24/2008 BMB/BMA PCRU!!! FISH 0% YEAH!!!!! Next appointment with Dr. Druker: Thursday,April 09, 2009 Gleevec PK Level taken every 3 months monitored by Novartis and Dr. Druker. PCR taken every 3 months! PCR-in June was a weak positive but Dr. Druker felt that it was the same as undetectable...repeated PCR in August 2008-undetectable!!! (BMB/BMA PCRU!!! FISH 0% YEAH!!!!!) I was told that I would not need another BMB as long as my numbers stay where they are!!! YIPEEEE! Quote Link to comment Share on other sites More sharing options...
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