I have a question for those of you who take 400mg gleevec; have you had shortness of breath? The reason for my question is I have sever COPD and in the last month I have been on one round of antibiotics and 2 rounds of steroids for what I thought was a COPD exacerbation. I still have extreme shortness of breath and thought maybe it is the gleevec. I was diagnosed in March of this year and symptoms seem to change every so often.
Gleevec and Short of Breath
Started by
Bronson_CLE
, Oct 17 2016 12:18 PM
10 replies to this topic
#1
Bronson_CLE
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Posted 17 October 2016 - 12:18 PM
KB
Diagnosed March 2016
Gleevec, 400 mg
2016 44.46 0.98 0.15% IS
2017 0.26 0.11 0.05 0.06% IS
2018 May
#2
Buzzm1
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Posted 17 October 2016 - 06:27 PM
I have a question for those of you who take 400mg gleevec; have you had shortness of breath? The reason for my question is I have sever COPD and in the last month I have been on one round of antibiotics and 2 rounds of steroids for what I thought was a COPD exacerbation. I still have extreme shortness of breath and thought maybe it is the gleevec. I was diagnosed in March of this year and symptoms seem to change every so often.
Bronson_CLE, what have your PCR BCR-ABL readings been? A drug break may be in order, along with a dosage reduction to 300mg when you resume treatment, if you have had a good response to Gleevec up to this point in time.
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
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#3
Bronson_CLE
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Posted 17 October 2016 - 07:03 PM
April 2016-IS: 44.46; August 2016-IS: 0.98.
November 1 I have blood work done; appt with onc. a week later.
The steroids didn't work the way they have in the past so I looked at the side effects for gleevec; which does list shortness of breath.
The last thing I want is to end up in the hospital.
#4
Buzzm1
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Posted 17 October 2016 - 07:16 PM
Bronson_CLE, you have had a good response to Gleevec, and will likely continue to do well even on a lowered dosage. When I had continuing and worsening stomach problems, and I couldn't take it anymore, I discontinued Gleevec for a few weeks early on, until my stomach settled itself and then I successfully resumed Gleevec. I did what I had to do at the time in order to take care of myself. It was something that I had to do.
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
#5
Bronson_CLE
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Posted 17 October 2016 - 07:19 PM
Thanks Buzzm1! I appreciate the advise.
Did you consult your onc before taking a break?
KB
Diagnosed March 2016
Gleevec, 400 mg
2016 44.46 0.98 0.15% IS
2017 0.26 0.11 0.05 0.06% IS
2018 May
#6
Buzzm1
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Posted 17 October 2016 - 07:29 PM
Thanks Buzzm1! I appreciate the advise.
Did you consult your onc before taking a break?
Not as I recall Bronson_CLE, although I believe you should tell your oncologist of your intention, it remains your decision.
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
#7
Buzzm1
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Posted 17 October 2016 - 07:41 PM
Exactly when in August did you do your PCR Bronson_CLE? It might behoove you to do your PCR now to avoid any confusion that might arise if you did it on Nov. 1, after having stopped Gleevec for a few weeks.
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
#8
snowbear
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Posted 20 October 2016 - 03:19 PM
Yep and I had no preexisting lung problems. I'm having a right heart cath done on Monday to confirm or rule out pulmonary hypertension. My pressures were high on the echo and the doctors have not been able to find another cause of it such as pleurisy, effusion, infection, scarring, etc.
#9
Billie Murawski
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Posted 20 October 2016 - 10:29 PM
Hi Snowbear,
Are you on Gleevac or Sprycel. I'm on 20mg Sprycel and I have a lot of trouble with shortness of breath. I get frequent chest x-rays I have a small pe right now, but we are just keeping an eye on it. I just had annual checkup with cardio doc and he checked for all the pah symptoms I am fine, but I still have the shortness of breath of course the anxiety kicks in when you can't breathe. Don't you just hate it when that happens?
Hi Bronson, I couldn't handle the stomache problems on Gleevac, but I don't remember any shortness of breath, back then there was no talk about reduced dosage, maybe I could have stayed on it with a lesser dose. I could go back on it instead of staying on Sprycel but I don't ever want to be that sick again, so I'm staying on S. It sounds like a lower dose might be good for you like everyone says it can make a big difference. When I went off Gleevac as they all say I have sharted my last shart!!! good luck Billie
#10
snowbear
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Posted 25 October 2016 - 11:09 AM
Hi Snowbear,
Are you on Gleevac or Sprycel. I'm on 20mg Sprycel and I have a lot of trouble with shortness of breath. I get frequent chest x-rays I have a small pe right now, but we are just keeping an eye on it. I just had annual checkup with cardio doc and he checked for all the pah symptoms I am fine, but I still have the shortness of breath of course the anxiety kicks in when you can't breathe. Don't you just hate it when that happens?
Hi Bronson, I couldn't handle the stomache problems on Gleevac, but I don't remember any shortness of breath, back then there was no talk about reduced dosage, maybe I could have stayed on it with a lesser dose. I could go back on it instead of staying on Sprycel but I don't ever want to be that sick again, so I'm staying on S. It sounds like a lower dose might be good for you like everyone says it can make a big difference. When I went off Gleevac as they all say I have sharted my last shart!!! good luck Billie
I'm on Gleevec, 400 mg. RHC came back normal - no PH. Great news! But still no explanation for the SOB other than my feeling that it's just a side effect of the Gleevec and I have to live with it.
#11
kat73
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Posted 25 October 2016 - 01:37 PM
Snowbear - This is GREAT news - no PH!! Hope the situation gets better.
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.
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