Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 Hi Pat, Sorry to read you are running into a rough patch with your treatment. I was diagnosed in September, 2004. I live and work in San Francisco. I am a consultant and owner of a small information technology consulting firm. I can empathize with your concerns and questions. When I was first diagnosed, I thought I could beat CML. I would take my medication, continue working and create a new state of normalcy in my life. About two months after starting Gleevec (400mg), I started having issues with myelosuppression (low blood counts). At the time I was optimistic that the condition was temporary and that I would be able to continue with my business and my goals. However, two months after restarting the Gleevec treatment I had a more severe bout with myelosuppression. My confidence was shaken to the point of considering selling my portion of the business. After discussing my situation with my oncologist, he reassured me that it was the Gleevec dosing that was causing the problem and he would adjust the Gleevec dosage that better suited me. In the beginning of May, 2005, I restarted Gleevec treatments at 300mg. Since restarting my treatment, I have very minor side effects. I have returned to all my activities (exercise 90 minutes a day and work at least 8 hour days) prior to my diagnosis. I apologize for my lengthy e-mail. I also have not been posting lately. If you would still like to talk, please contact me personally via my e-mail address (see below) and so we can arrange a time to talk. Take care. , San Francisco Dx: 9/04 Gleevec: 10/04 300mg CCR: still working on it E-mail: <mailto:pmuraki@...> pmuraki@... _____ From: [mailto: ] On Behalf Of Dr. Pat Sent: Monday, May 23, 2005 6:03 PM Subject: [ ] Questions & Concerns Hello to Everyone, I completed 3 months of treatment with 400mg Gleevac, get bi-monthly blood work done and see my doctor (Onc)once a month. Stanford saw me following diagnosis and has not contacted me during the three months. I have had no FISH test or PCR tests done as of yet only one BMB. My question is am I to early in the treatment to have reached cytogenic remission, and at what stage should these tests be done. I am in California and would love to talk on the phone with someone who has more experience than myself. (At my expense of course) I have not been able to join in the chats because of work. I do feel that I need more contact than just posting. I am not liking the Gleevac treatment and am currently going thru a great deal of confusion with what else can be done. I am trying to sell my business so I can focus more on my health but not even sure that is a good idea, maybe to much time to think. I have been following everyones posts here and only this groups I think it might be a bit too much to get more involved with other groups because it does get depressing after awhile. Everyone is in my thoughts and prayers daily, and I pray there are changes that are coming our way thru the stem cell research. God Bless you all! Dr. Pat Dx 2/2005 _____ Quote Link to comment Share on other sites More sharing options...
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