Advanced Member
Posted 06 November 2016 - 05:39 PM
Are there others on Gleevec 600 who have similar side effects to me?
I'm belching all day. My stomach swells up and then up it comes. Normally, i'd say "who cares", but unfortunately it comes with a horrible putrid taste, and I get this all day. Also, at night, I have monstrous acid reflux. My mouth is filled with the junk, burning my throat, mouth, and gums.
Is anyone else getting that, or should I assume something else is causing it?
Diagnosed in February 2014. Started Imatinib 400 in April.
2014: 3.18 0.91
2015: 0.22 0.16 0.04 0.55
2016: 0.71 0.66
(Started Imatinib 600 in April 2016)
2016: 0.42 0.13 0.45
2017: 0.17 0.06 0.10 0.06 0.34
Advanced Member
Posted 06 November 2016 - 08:37 PM
Dom, has Gleevec 600mg helped to lower your PCR reading? I'm assuming you are taking it in the evening as a single dose of 600mg. Taking Gleevec 400mg a full hour after my largest meal of the day, dinner, helped alleviate the nausea for me. Thinking you might possibly want to split your dose between morning and evening to lessen the chance of acid reflux, or even splitting the dose between lunch and dinner; whatever works best for you. PS .. I've had occasional acid reflux even with Gleevec 100mg; it seemed related to high fat content of the meal I took it after. Better luck.
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
Advanced Member
Posted 06 November 2016 - 09:38 PM
Diagnosed in February 2014. Started Imatinib 400 in April.
2014: 3.18 0.91
2015: 0.22 0.16 0.04 0.55
2016: 0.71 0.66
(Started Imatinib 600 in April 2016)
2016: 0.42 0.13 0.45
2017: 0.17 0.06 0.10 0.06 0.34
Advanced Member
Posted 07 November 2016 - 10:05 AM
Hi Dom. I started 600 mg Gleevec about 6 weeks ago. Before that I'd been on 400 mg Gleevec since Jan 2015. We upped my dosage for similar reasons as you, I had hit 0.1 at my year and a half PCR (lowest number so far), but 3 months later I was at 0.3. I've always split my Gleevec dosage daily, so I'm currently taking 300 mg in the morning with breakfast, and 300 mg at night with dinner.
I have noticed more digestion issues on the higher dosage, and some acid reflux, which I've only ever had before when I was pregnant 12 years ago. But I haven't had anything as bad as you describe. I'd also suggest splitting your dosage daily. But seeing a GP also wouldn't hurt!
01/15: Diagnosed, 195% PCR, 100% FiSH, Began Gleevec 400 mg per day
04/15: 58.1% PCR
08/15: 1.6% PCR, 0% FiSH
11/15: 0.6% PCR
02/16: 0.4% PCR
05/16: 0.1% PCR
09/16: 0.3% PCR, Began Gleevec 600 mg per day
12/16: 0.1% PCR
03/17: 0.2% PCR, Began Tasigna 600 mg per day
07/17: 0.08% PCR
Advanced Member
Posted 07 November 2016 - 07:12 PM
I just took another test yesterday.
Dom, please let us know the results of your test and add it to your Signature summary ... thanks.
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
Advanced Member
Posted 08 November 2016 - 01:34 PM
Advanced Member
Posted 09 November 2016 - 05:24 PM
Diagnosed in February 2014. Started Imatinib 400 in April.
2014: 3.18 0.91
2015: 0.22 0.16 0.04 0.55
2016: 0.71 0.66
(Started Imatinib 600 in April 2016)
2016: 0.42 0.13 0.45
2017: 0.17 0.06 0.10 0.06 0.34
Member
Posted 18 November 2016 - 12:23 PM
have your tried drinking pure wheat grass juice? I used to drink it when I was initially diagnosed with CML. I have also drank Apple, Beet Root and Carrot juice too, cold pressed.
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