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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

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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

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