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Need advice on Sprycel dosage

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Hi everyone I recently came into a problem with my treatment when suddenly I had colitis and turned into c diff.. I recently had bad bowel movements and blood. I’m taking 140mg Sprycel,  my numbers on my pcr have been 0.026 to 0.037 recently. My doctor is suggesting that I should switch my tki if my bowel movements don’t improve and I want to lower my dosage bc I didn’t have a problem with 100mg Sprycel and I had good numbers 

0.5 6 months 

0.05 10months

0.08 16months changed to 140mg sprycel

0.044 19 months 

0.029 23months 

0.037 ( colitis and c diff ) 28months

 

any advice? Should I change tki or go back to 100 

Hi Trevor ,sorry you are having problems .You ask for advice ,my advice would be change your bloody doctor I presume he isn't a CML specialist .No way would I put 140 mg in my body not with your very low numbers it sounds like you are being poisoned it's so toxic .You could be on 50 mg or even 20 mg by the look of things .I am not a specialist just a normal CML er like you ,I don't know your history .But just lower dose first  before thinking of changing TKI ,don't be bullied listen to your body and it is crying out for change ,lots of luck hope you feel better soon ,Denise.

Hi six years back i had suffered with proctitis.i had the same symptoms you are going through now.i took pentasa for just 15 days and got relieved from symptoms.i don't know how severe is your colitis.But if you don't have severe colitis,then please take pentasa(not the oral one).i have been in remission for six years and i don't take take tablets though doctor advised me to take mesalamine 400mg once per day for the rest of my life.i think some of the tki's have colitis as side effects.i remember reading imatinib has colitis as one of the side effects.since you are maintaining log 3.5 to log 4 for long period you can reduce your dosage 70 mg.

Hi six years back i had suffered with proctitis.i had the same symptoms you are going through now.i took pentasa for just 15 days and got relieved from symptoms.i don't know how severe is your colitis.But if you don't have severe colitis,then please take pentasa(not the oral one).i have been in remission for six years and i don't take take tablets though doctor advised me to take mesalamine 400mg once per day for the rest of my life.i think some of the tki's have colitis as side effects.i remember reading imatinib has colitis as one of the side effects.since you are maintaining log 3.5 to log 4 for long period you can reduce your dosage 70 mg.

Let me share my expereince,

I am Hong Kong CML Patient diagnosed on Jan 2014 when I only 30 years old.

During the next fix years, I taken 100mg as dosage and keep log4 result steadily. 

Since the Treatment free trial threshold was log4.5, I am very worry why I still not reached the level.

Meanwhile, I suffer from too much side effect such as hair loss, bad skin quality and fever (weak immune system)

Last Year, doctor let me drop the dosage to 70mg and those side effect reduce and at the end of year log 4 maintained.

In the PCR test in the mid of year, I got log 5 finally. I am amazing why drop the dosage will get the better result.

I think it may becasue the drug will reduce your immune system so now release back my immune system.

I have dropped to 50mg now.

 

Thanks

Let me share my expereince,

I am Hong Kong CML Patient diagnosed on Jan 2014 when I only 30 years old.

During the next fix years, I taken 100mg as dosage and keep log4 result steadily. 

Since the Treatment free trial threshold was log4.5, I am very worry why I still not reached the level.

Meanwhile, I suffer from too much side effect such as hair loss, bad skin quality and fever (weak immune system)

Last Year, doctor let me drop the dosage to 70mg and those side effect reduce and at the end of year log 4 maintained.

In the PCR test in the mid of year, I got log 5 finally. I am amazing why drop the dosage will get the better result.

I think it may becasue the drug will reduce your immune system so now release back my immune system.

I have dropped to 50mg now.

 

Thanks