Guest guest Posted September 21, 2008 Report Share Posted September 21, 2008 Dear Ann, I don't have information on my former drugs that I used to keep on file when I was on them, because that was the only information doctors had to go on, especially in ER. I didn't keep them for posterity. I can report that when I was on Sprycel, I had pleural and pericardial effusions and pneumonia at the same time, even on the minimum dose. My cardiologist also reported that I had pulmonary hypertension from the MRI. My pulmonologist said that was not a good barometer to use to detect the pulmonary hypertension. It is fatal by the way, so I would have everything checked out to your satisfaction. That report was in error, however, and other tests proved it to be negative for the disease. There were some reports of Gleevec causing heart problems, but that proved to be unsubstantiated and there is really no proof that is the case. I'm sorry that you are experiencing these symptoms. I hope you have a good cardiologist who has patience to try to find out the root cause. 140 mg. of Sprycel is the maximum dose and perhaps they need to lower it or give you a vacation from it for a week or so. My dose was gradually dropped to 20 mg. a day. It did nothing to reign in the CML as far as remission is concerned, but I was stable. Do follow up with everything that you have concerns about. There is no one doctor who can take care of everything that comes up. My oncologist at MDACC asks if I have any complaints and upon recitation, he asks what my doctor says about it. He does not try to treat my other symptoms and quite frankly, I want him to concentrate on my CML status. Let's hope you can iron out all the " creases " in your treatment and even though you may be in CCR, MMR or PCRU, you may need to make some adjustments or change drugs. Your problems seem more serious than a rash that we often complain of. What's good for the goose is not always good for the gander, I found that out first hand, going from trial to trial. Keep us posted. Blessings and prayers, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2008 Report Share Posted September 21, 2008 thanks anyway. [ ] Effusions Dear Ann, I don't have information on my former drugs that I used to keep on file when I was on them, because that was the only information doctors had to go on, especially in ER. I didn't keep them for posterity. I can report that when I was on Sprycel, I had pleural and pericardial effusions and pneumonia at the same time, even on the minimum dose. My cardiologist also reported that I had pulmonary hypertension from the MRI. My pulmonologist said that was not a good barometer to use to detect the pulmonary hypertension. It is fatal by the way, so I would have everything checked out to your satisfaction. That report was in error, however, and other tests proved it to be negative for the disease. There were some reports of Gleevec causing heart problems, but that proved to be unsubstantiated and there is really no proof that is the case. I'm sorry that you are experiencing these symptoms. I hope you have a good cardiologist who has patience to try to find out the root cause. 140 mg. of Sprycel is the maximum dose and perhaps they need to lower it or give you a vacation from it for a week or so. My dose was gradually dropped to 20 mg. a day. It did nothing to reign in the CML as far as remission is concerned, but I was stable. Do follow up with everything that you have concerns about. There is no one doctor who can take care of everything that comes up. My oncologist at MDACC asks if I have any complaints and upon recitation, he asks what my doctor says about it. He does not try to treat my other symptoms and quite frankly, I want him to concentrate on my CML status. Let's hope you can iron out all the " creases " in your treatment and even though you may be in CCR, MMR or PCRU, you may need to make some adjustments or change drugs. Your problems seem more serious than a rash that we often complain of. What's good for the goose is not always good for the gander, I found that out first hand, going from trial to trial. Keep us posted. Blessings and prayers, Lottie Quote Link to comment Share on other sites More sharing options...
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