Monday of this week I was diagnosed with pleural effusion in one lung. Taken off sprycel and put on a diuretic for a week before my follow appointment. Been in Sprycel 100 for over 3 years and this is the first for me on this. What can I expect in my treatment?
Pleural effusion
Started by
mscl
, Oct 31 2015 11:21 AM
10 replies to this topic
#1
mscl
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Posted 31 October 2015 - 11:21 AM
Dx 2/10/12.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.
#2
cedespres
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Posted 31 October 2015 - 11:56 AM
Monday of this week I was diagnosed with pleural effusion in one lung. Taken off sprycel and put on a diuretic for a week before my follow appointment. Been in Sprycel 100 for over 3 years and this is the first for me on this. What can I expect in my treatment?
Hi mscl,
I had pe a few months ago on 100mg sprycel. I ended up in the hospital 3 times in 5 weeks. My onc had me take 50/70 sprycel every other day.(50 0ne day and 70 the next) They experimented with different diuretics over those hospitalizations starting with lasix ( did not work) then went to bumex (hearing problem) and now on torsemide 60mg. I am now on 70mg sprycel. This is currently working to keep the fluid from building up in chest. I hope this info is helpful for your case.
Ed
#3
mscl
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Posted 31 October 2015 - 12:04 PM
Thank you for your response. First time experience for me and a little nervous.
Dx 2/10/12.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.
#4
Marnie
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Posted 31 October 2015 - 06:34 PM
Hi, mscl. .
I had 2 pleural effusions while on 100 mg Sprycel. They occurred at about the 2.5 year mark after switching from Gleevec to Sprycel. Mine were so bad that I had a thoracentesis (stuck a needle in my back to drain the fluid). The first time they drained nearly 2 liters of fluid. The second was just over 1 liter. The thoracentesis wasn't that bad, though as a long distance runner, I've always had a pretty high pain tolerance, so maybe others who've had one would disagree.
I took a drug break for just over a month after the second p.e. and am now on 50 mg Sprycel. My doc and I are working together to figure out what dosage is high enough to keep the cml at an acceptable level, and low enough to avoid another p.e. So far, 50 mg seems to be doing the trick.
I didn't do any diuretics or have any hospital stays. Just in for a quick procedure to drain the lung lining. . .took about an hour each time. Since being on reduced dosage, I haven't had any more problems with p.e.
Good luck!
Marnie
#5
mscl
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Posted 31 October 2015 - 07:17 PM
Thank you Marnie!
Dx 2/10/12.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.
#6
DebDoodah22
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Posted 01 November 2015 - 12:20 PM
I have been on Sprycel for two years now. I had two small effusion incidents within the first year. Each time a 2-3 week drug break, plus dose reduction to 70 and then 80 resolved the problem with little detriment to MMR progress. I have remained on 80 in the second year. I also switch my time of day for taking med to mornings....taking supplements before bed and S in the morning has helped with some side effects including a low dull headache on waking that plagued me for quite a while. No diuretics, but I did continue my magnesium and potassium throughout.
#7
kat73
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Posted 01 November 2015 - 02:14 PM
I know this sounds stupid, but here goes anyway. How do you find out you have a pleural effusion? The reason I ask is, I had one while I was in the hospital for something else - it showed up on a chest x-ray - but NO ONE ever mentioned it to me. I was never treated for it or taken off Sprycel. I only found out because I had occasion to look through my medical records from that hospital stay. When I mentioned it to my onc, he was not disturbed at all. So, my conclusion was, no biggie. I'm also asking because I have so much fatigue and lately, I have been absolutely unable to lose weight - in fact it keeps inching up - and I'm actively doing all the things I did before to lose weight. So, now I'm thinking, fluid buildup somewhere? I just had an annual routine physical and the doctor listened to my lungs, of course - wouldn't she have heard something? ( I wasn't thinking that day about pleural effusion, or I would have asked all this.) Can you have a significant pleural effusion and not be short of breath?
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#8
tiredblood
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Posted 01 November 2015 - 07:39 PM
Everyone I've seen with a pleural effusion, often around a liter removed with thoracentesis, had shortness of breath as their chief complaint.
#9
mscl
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Posted 01 November 2015 - 08:17 PM
Yes, shortness of breath lead me to call my Onc. He was out of town so they said to go to ER or call PCP. Called PCP and he was out of town too...sensing a pattern here 
. Went to ER where they diagnosed as PE. Gave me the choice of the needle or diuretic...I chose diuretic because they said it was a moderate level. Any more, and it would have been the needle.
. Went to ER where they diagnosed as PE. Gave me the choice of the needle or diuretic...I chose diuretic because they said it was a moderate level. Any more, and it would have been the needle.
Dx 2/10/12.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.
#10
kat73
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Posted 02 November 2015 - 05:04 PM
So, how would I have had a pleural effusion going on while in the hospital and I didn't have any symptoms? How is it diagnosed ordinarily? By chest x-ray? Would that show fluid in the nearby areas as well?
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
#11
mscl
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Posted 02 November 2015 - 06:55 PM
An X-ray a week ago to Dx. CT scan today, no change in fluid level so it's the needle tomorrow to test to determine if the Sprycel is the culprit. If so, more diuretic Rx and possible steroid.
Dx 2/10/12.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.
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