Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 Dear , I am sorry you have been diagnosed with CML and that you encountered so many problems getting treatment. I am glad that you are getting your needs met, finally. Do not give up your quest to find meaningful work or to go back to living your life. You may encounter challenges with both along the way, but with perseverance, you will win out. There are programs that pay for cancer drugs, you just have to ask questions and you will find where they are, as someone has already been there and is willing to share. Novartis furnishes Gleevec, as that is probably the first TKI that you will be given. Hydrea is only a band aid used to bring your white counts down to normal, but it does not control the disease. I was on it for 4 years and the charts on my progress nevered wavered away from 100% Ph+. It was like having a governor on my gas pedal. It is still a useful drug, but be sure you are are taking allopurinal, a very inexpensive drug used to control gout, as Hydrea is famous for that. Probably by the time you begin to get responses from the group because of the delay in time when letters are posted and the time they are released to the group, you will already be on Gleevec and that information will become moot. Many of us have found our silver lining when we found this group, whose members were so willing to share their experiences and give newcomers a show of positive responses. I hope you will become a regular contributor so we can track your record and allow us to walk the walk with you. Hands & hearts, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
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