Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Dear Lilia, It is not unusual to have low counts when you begin taking any new drug for CML. When I started Gleevec, I noticed my cbc showed my wbc to be l.0. I freaked out and called my doctor in Houston. He said not to worry about it, that it would gradually climb upwards. I also started out on 100 mg. Gleevec and gradually increased it up to 600 mg. After 4 years, they switched me to a new trial, now called Sprycel. I am no longer on that, either, I am in the SKI 606 trial. Jacki is the only person I correspond with who is in the same trial. If anyone wants to chat and they are on the ski trial, you can contact me. It is different for everyone, Lilia, there is no one size fits all. Some people reach CCR in a matter of weeks and I am yet to see it after 12 years. Some people have suppressed counts and others are normal. 459k for your platelets is reasonable. The normal counts range from 150k to 450k, so you are not far off the mark. If your platelets should go down to 50k, you would speak to your oncologist and hopefully a CML specialist if you have one in your area. They should give you a brief vacation from your meds until your platelets recover a bit. Your platelets are the sticky stuff in your blood that helps to make your blood clot, without it, we would be free bleeders. Your doctor is doing the right thing in checking your blood level test to see how much of the Gleevec you retain, to find the best dose for you. It is not unusual for your counts to flucuate. If you are new at this, it is troubling for you, but once your metabolism adjusts to the meds, it will level out. Wishing you all the best, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Lilia, I started at 300 mg of Gleevec and my wbc count dropped to 1.0. But I never got sick even though that is a pretty puny immune system. I wanted to go to 400 mg and my hem/onc said he would up my dose when my wbc count hit 5. It took quite a few months , it hit 5 and I went to 400 mg . My wbc count has stayed pretty much the same between 5 & 6. I have also remained anemic. My platelets are within the normal range. But except for gleevec side effects and a staph infection I've been pretty healthy. Be prepared for a wild ride with the side effects and keep your doctor informed. Some of us can take Gleevec and some of us can't tolerate it. It helps to know the side effects are expected. Thank God for the people on this site. I at least feel normal when I talk with them about my loss of pigment in my hands and feet , those crazy cramps in my legs and fingers, strange rashes, puffy eyes and oh yeah watery eyes and gastric distress. Welcome sister warrior...fight on. Chi From: Lottie Duthu <lotajam@...> Subject: [ ] Lose dose of Gleevec " CML " < > Date: Thursday, October 23, 2008, 4:34 PM Dear Lilia, It is not unusual to have low counts when you begin taking any new drug for CML. When I started Gleevec, I noticed my cbc showed my wbc to be l.0. I freaked out and called my doctor in Houston. He said not to worry about it, that it would gradually climb upwards. I also started out on 100 mg. Gleevec and gradually increased it up to 600 mg. After 4 years, they switched me to a new trial, now called Sprycel. I am no longer on that, either, I am in the SKI 606 trial. Jacki is the only person I correspond with who is in the same trial. If anyone wants to chat and they are on the ski trial, you can contact me. It is different for everyone, Lilia, there is no one size fits all. Some people reach CCR in a matter of weeks and I am yet to see it after 12 years. Some people have suppressed counts and others are normal. 459k for your platelets is reasonable. The normal counts range from 150k to 450k, so you are not far off the mark. If your platelets should go down to 50k, you would speak to your oncologist and hopefully a CML specialist if you have one in your area. They should give you a brief vacation from your meds until your platelets recover a bit. Your platelets are the sticky stuff in your blood that helps to make your blood clot, without it, we would be free bleeders. Your doctor is doing the right thing in checking your blood level test to see how much of the Gleevec you retain, to find the best dose for you. It is not unusual for your counts to flucuate. If you are new at this, it is troubling for you, but once your metabolism adjusts to the meds, it will level out. Wishing you all the best, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2008 Report Share Posted October 24, 2008 Lilia, I started at 300 mg of Gleevec and my wbc count dropped to 1.0. But I never got sick even though that is a pretty puny immune system. I wanted to go to 400 mg and my hem/onc said he would up my dose when my wbc count hit 5. It took quite a few months , it hit 5 and I went to 400 mg . My wbc count has stayed pretty much the same between 5 & 6. I have also remained anemic. My platelets are within the normal range. But except for gleevec side effects and a staph infection I've been pretty healthy. Be prepared for a wild ride with the side effects and keep your doctor informed. Some of us can take Gleevec and some of us can't tolerate it. It helps to know the side effects are expected. Thank God for the people on this site. I at least feel normal when I talk with them about my loss of pigment in my hands and feet , those crazy cramps in my legs and fingers, strange rashes, puffy eyes and oh yeah watery eyes and gastric distress. Welcome sister warrior...fight on. Chi From: Lottie Duthu <lotajam@...> Subject: [ ] Lose dose of Gleevec " CML " < > Date: Thursday, October 23, 2008, 4:34 PM Dear Lilia, It is not unusual to have low counts when you begin taking any new drug for CML. When I started Gleevec, I noticed my cbc showed my wbc to be l.0. I freaked out and called my doctor in Houston. He said not to worry about it, that it would gradually climb upwards. I also started out on 100 mg. Gleevec and gradually increased it up to 600 mg. After 4 years, they switched me to a new trial, now called Sprycel. I am no longer on that, either, I am in the SKI 606 trial. Jacki is the only person I correspond with who is in the same trial. If anyone wants to chat and they are on the ski trial, you can contact me. It is different for everyone, Lilia, there is no one size fits all. Some people reach CCR in a matter of weeks and I am yet to see it after 12 years. Some people have suppressed counts and others are normal. 459k for your platelets is reasonable. The normal counts range from 150k to 450k, so you are not far off the mark. If your platelets should go down to 50k, you would speak to your oncologist and hopefully a CML specialist if you have one in your area. They should give you a brief vacation from your meds until your platelets recover a bit. Your platelets are the sticky stuff in your blood that helps to make your blood clot, without it, we would be free bleeders. Your doctor is doing the right thing in checking your blood level test to see how much of the Gleevec you retain, to find the best dose for you. It is not unusual for your counts to flucuate. If you are new at this, it is troubling for you, but once your metabolism adjusts to the meds, it will level out. Wishing you all the best, Lottie Quote Link to comment Share on other sites More sharing options...
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