Guest guest Posted July 2, 2005 Report Share Posted July 2, 2005 I'm usually more of a lurker than a poster, but I'm hoping for some input for a change. It's just been 2 years since my diagnosis and my first year on 400mgs of Gleevec was uneventful. I've tolerated it very well and was living my life just like before being diagnosed with CML. After setting a baseline of qpcr results my doctor at City of Hope has become concerned with my ever rising numbers. I only once had a log reduction and now in my second year I continue to go up. She increased me to 600 mgs 5 months ago with no response. In fact I went up another log. My last FISH now has come back 11% ph positive and she wants me to start 800mgs. She wants me to see Dr. Sawyers at UCLA and try to get into the BMS trial too. She also said the AMN trial is coming to City of Hope soon so that's an option as well. It's hard to imagine that I'm resisting Gleevec but that's what she's afraid is happening. My sister is a perfect match so the opinion of the doctors there is to consider transplant but I'm very adament about that being my last option. Hate all this attention being drawn to my health especially when I still feel so healthy. I feel they're over- reacting. Am I in denial? Thanks all for listening. dx 5/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2005 Report Share Posted July 2, 2005 At 02:20 AM 7/2/05 +0000, you wrote: > My last FISH now has come back 11% ph positive >and she wants me to start 800mgs. She wants me to see Dr. Sawyers at >UCLA and try to get into the BMS trial too. She also said the AMN >trial is coming to City of Hope soon so that's an option as well. >It's hard to imagine that I'm resisting Gleevec but that's what she's >afraid is happening. My sister is a perfect match so the opinion of >the doctors there is to consider transplant but I'm very adament >about that being my last option. Hate all this attention being drawn to >my health especially when I still feel so healthy. I feel they're over- >reacting. Am I in denial? Thanks all for listening. > > >dx 5/03 Hi , I think you are getting good advice. With an increasing PCR value, and now increasing FISH, it looks like you are relapsing on Gleevec. Go to UCLA, so they can do mutation testing. If you have a mutation, they often know if it will respond well to a higher dose of Gleevec....and if it won't. Then you can decide 'what next'........ You have several good options. Everyone wants to have a great response to Gleevec and stay stable....but sometimes that is not the case. It sounds like this is the right time for additional testing and to consider your options. Remember, people in chronic phase CML, which you are, feel healthy....so that does not give the full story about the status of your disease. So, I don't think they are over-reacting.....remember knowledge is power, so find out what is going on. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2005 Report Share Posted July 2, 2005 > I'm usually more of a lurker than a poster, but I'm hoping for some > input for a change. It's just been 2 years since my diagnosis and my > first year on 400mgs of Gleevec was uneventful. I've tolerated it > very well and was living my life just like before being diagnosed > with > CML. After setting a baseline of qpcr results my doctor at City of > Hope has become concerned with my ever rising numbers. I only once > had a log reduction and now in my second year I continue to go up. > She increased me to 600 mgs 5 months ago with no response. In fact I > went up another log. My last FISH now has come back 11% ph positive > and she wants me to start 800mgs. She wants me to see Dr. Sawyers at > UCLA and try to get into the BMS trial too. She also said the AMN > trial is coming to City of Hope soon so that's an option as well. > It's hard to imagine that I'm resisting Gleevec but that's what she's > afraid is happening. My sister is a perfect match so the opinion of > the doctors there is to consider transplant but I'm very adament > about > that being my last option. Hate all this attention being drawn to my > health especially when I still feel so healthy. I feel they're over- > reacting. Am I in denial? Thanks all for listening. > > > dx 5/03 _________________________________________ Hi , I'm followed locally by Dr. Forman at COH, and I am also in an IM trial for the newly diagnosed at MDA since 4-2001. Dr. Forman periodically checks my PB RT-PCR, so I'm familiar about what's going on with their technology. About six months ago they changed their PCR procedures so that they could test to a higher sensitivity. Before they were testing accurately to 10e4, now they are testing to 10e6. You may already have that data, but I wanted you to know. I used to be PCRU at COH, but never at MDA. I think C. and COH are giving you good advice about going to Dr. Sawyers for the mutation testing and advice on BMS. Remember that COH is a strong transplant center, and that with a sibling match they would be remiss in failing to advise you of that option. However, I do know that they will help you obtain the treatment of your choice. They are very helpful in that way. I will be at COH on July 5th. My RT-PCRs are increasing, so they are observing me more closely these days. Let me know whether you would like to meet up at COH. I live pretty close to the facility. Warm Regards, Quote Link to comment Share on other sites More sharing options...
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