Still New To This But Getting Used To Somethings, But...

On 1/14/2008 Nightcrawler76 wrote:

Its been a long process since the last time that I posted a message. I have been on 100mg of Gleevec for a few months now after starting out at 400 then down to 200 and finally ending up at my present dose. However now i am having pain that is growing in intensity as well as areas affected and frequency. Is this caused from needing to up my dosage or what? Please let me know of your experiences.

Hi:  I am a little confused with the way you are being given your doses. 400mg. is your base dose.  I have been on Gleevec 400Mg. since 2000, and I saw the best doctors around in N.Y. during the clinical trials of Gleevec.  The one thing I was told was that I would not be dropped below 400mg., but that I might have to be increased.  Thank God it did not happen.  Please get a second and even third opinion.  You mention pain, but your not saying where.  Some of the side effects are joint pain.  I had a lot in the beginning, but as Gleevec does its job and kills off the cancer cells, and your working your way to remission I feel it lessens in time.  You may experience foot cramping, or swelling in your eyelids.  You do get aches and pains, but nothing you cannot deal with. May I ask why they keep adjusting your dose.  My oncologist keeps close watch on my numbers of my WBC and my RBC.  I did become anemic also with the Gleevec, and I get very cold all the time.  All I can say is that the side effects are worth it as long as Gleevec is doing its job.  I would like to converse with you anytime.      Suzzie

On 1/20/2008 Suzzie59 wrote:

 

On 1/14/2008 Nightcrawler76 wrote:

Its been a long process since the last time that I posted a message. I have been on 100mg of Gleevec for a few months now after starting out at 400 then down to 200 and finally ending up at my present dose. However now i am having pain that is growing in intensity as well as areas affected and frequency. Is this caused from needing to up my dosage or what? Please let me know of your experiences.

Hi:  I am a little confused with the way you are being given your doses. 400mg. is your base dose.  I have been on Gleevec 400Mg. since 2000, and I saw the best doctors around in N.Y. during the clinical trials of Gleevec.  The one thing I was told was that I would not be dropped below 400mg., but that I might have to be increased.  Thank God it did not happen.  Please get a second and even third opinion.  You mention pain, but your not saying where.  Some of the side effects are joint pain.  I had a lot in the beginning, but as Gleevec does its job and kills off the cancer cells, and your working your way to remission I feel it lessens in time.  You may experience foot cramping, or swelling in your eyelids.  You do get aches and pains, but nothing you cannot deal with. May I ask why they keep adjusting your dose.  My oncologist keeps close watch on my numbers of my WBC and my RBC.  I did become anemic also with the Gleevec, and I get very cold all the time.  All I can say is that the side effects are worth it as long as Gleevec is doing its job.  I would like to converse with you anytime.      Suzzie

 

 

My Doctor kept changing the dose because of the pain I was experiencing cause it was mind numbingly bad in the jaw at first then as days went by it traveled into my arms and back and even my thighs which is saying something about the pain if I can feel it in my legs since I have little sensation there due to me being born with Spina Bifida. My original dose or base dose was 400mg and he slowly worked it down to 100mg until recently when a colleague of his informed him of what you said about Gleevec so he changed me to Sprycel, not sure if that spelling is correct. Which seems to be working for me. He changed me to this new med because the Gleevec was not doing exactly what it should, it was only doing half the job. I think he said that it was getting rid of the mutation that occurs with our condition, but wasn't allowing the body to make new ones. However I might have my facts mixed up it happens occassionally.

also I noticed you mentioned getting cold often. Is that real common with CML? Cause I have thought back on it and it seemed that I went from being a person who could go out in a t-shirt on a 50 degree day or sometimes even colder to being one who thinks thats very cold now and I have to bundle up... to me that means having to wear a jacket. Which is very unlike me. Anyway thank you for responding to my last message and look forward to hearing back from you about this one.

 Nate