7 replies to this topic

[acl]

Hello Trey and everyone, I was diagnosed March 2014 with CML, treated with Imatinib 300 mg. daily. I had an appointment with the Hematologist today. My PCR BCR/ABL from July 2015 was 0.24%, August 2015 0.22%, September 2015 0.18%, November 2015 0.18%. I asked him when do you increase the Imatinib dosage and he said if it goes up to 1.0% he will prescribe another medication. If I have a choice I would like to increase the Imatinib dosage before I change meds. He said that 400 mg. of Imatinib is for man like me that weighs 230 to 240 lbs. My CBC test result from today was excellent, only the LACTATE DEHYDROGENASE (cell turnover) was 633H Reference range 313-618. Your opinion is appreciated. He ordered another QPCR bcr/abl test today, he will receive the results in 36 to 40 days.

 

I told him that I really would like to reach 0.1% Major Molecular Response. He said that this lab uses .15% IS as MMR and that I am really close. I said in all the books that I have read 0.1% is Major Molecular Response. I hate when he tells me that .15% is MMR. Thank you.

acl

[CallMeLucky]

Hi acl

Do you mind me asking where you are located? Are you in US or somewhere else in the world? Your doctor's statements are a bit odd and if possible you might want to get a second opinion from a cml expert. Standard dose of Gleevec is 400 mg, you should only be lower if you have severe side effects that warrant it. I never heard of Gleevec dosage being dependent on a persons weight. Adult dosage is 400 mg, that is the dose I was on and at the time I was about 155 lbs.
For PCR IS MMR is 0.1, not 0.15. That would be another questionable statement.
Last it doesn't take 30-40 days to get PCR results, at least it shouldn't which is why I wondered if maybe you were in another healthcare system where maybe things get processed very slowly. In general PCR should come back in 7-14 days.
It seems like you are doing well so no real harm or foul, but I do question some of your doctor's statements so maybe consider a second opinion.

Good luck.

[acl]

Hi acl

Do you mind me asking where you are located? Are you in US or somewhere else in the world? Your doctor's statements are a bit odd and if possible you might want to get a second opinion from a cml expert. Standard dose of Gleevec is 400 mg, you should only be lower if you have severe side effects that warrant it. I never heard of Gleevec dosage being dependent on a persons weight. Adult dosage is 400 mg, that is the dose I was on and at the time I was about 155 lbs.
For PCR IS MMR is 0.1, not 0.15. That would be another questionable statement.
Last it doesn't take 30-40 days to get PCR results, at least it shouldn't which is why I wondered if maybe you were in another healthcare system where maybe things get processed very slowly. In general PCR should come back in 7-14 days.
It seems like you are doing well so no real harm or foul, but I do question some of your doctor's statements so maybe consider a second opinion.

Good luck.

Hi  CallMeLucky, Thank you for the reply it was appreciated.  I live in Ontario Canada 60 Miles outside of Toronto. He said that increasing my dosage would mess up my liver and that I can not live without a liver. He orders my PCR test as Routine that's why it takes 30 to 40 days for him to receive the results. He is ordering it every two months, and that's fine with me.

The lab report reads:  IS-NCN 0.18  % BCR-ABL is equivalent to NCN, or normalized Copy Number **IS-NCN is the % BCR/ABL converted to the international scale. This patient's response status on the international scale is:  No Major Molecular Response (IS-NCN greater than or equal to 0.15).

I need an interpreter to interpret this lab report, Are they really saying that MMR is 0.15%? I think that I have reached a plateau, but time will tell. Thanks.

acl

[Trey]

You are doing well.  No need to change unless you want to, but probably could go up to 400mg now. 

[acl]

You are doing well.  No need to change unless you want to, but probably could go up to 400mg now. 

Hi Trey, Thank for the reply it was appreciated! I think that my hematologist is being overly cautious, and he knows that I am unconfortable with the idea of switching off of Imatinib unless there is a good reason. I would hate to start all over with a new drug and maybe even worse side effects! I am doing well, but I am a bit worried that I have not reached (0.1%)  MMR. My next appointment with the onc will be in two months, but they will phone me with the PCR result from January 6/16 in approximately 36 to 40 days, and if there is no change in BCR-ABL percentage or if it has increased he will have to increase my dosage to 400 mg. If he doesn't I will request a second opinion. Your words of supreme wisdom were appreciated! Thanks again.

acl

[rcase13]

Ugh there is no way I could make it 36 to 40 days. My last PCR results came the next day. This time its been 4 days and I am so nervous my stomach is ill. I think 36 days would do me in.

 

It looks like your very close to your goal. Good luck crossing fingers and toes for MMR for you!

[scuba]

Ugh there is no way I could make it 36 to 40 days. My last PCR results came the next day. This time its been 4 days and I am so nervous my stomach is ill. I think 36 days would do me in.

 

It looks like your very close to your goal. Good luck crossing fingers and toes for MMR for you!

 

Gives new meaning when they say "CML is a slow disease" ... so slow we don't even bother getting your results back to you for over a month!

[acl]

Ugh there is no way I could make it 36 to 40 days. My last PCR results came the next day. This time its been 4 days and I am so nervous my stomach is ill. I think 36 days would do me in.

 

It looks like your very close to your goal. Good luck crossing fingers and toes for MMR for you!

Hello, rcase13 and Scuba thank you for the reply!  He orders the PCR now every two months! For the past 22 months he keeps saying that the goal is to reach 0.15% for him that's MMR. If he says that once more I am going to tell him that BCR/ABL of 0.15% is NOT good enough for me, that my goal is to reach Undetectable 0.00000. There are four year olds taking 400 mg. of Imatinib and he tells me that 400 mg is for a man of his size, and I will tell him that.  I probably will have to find a good Hematologist at the Princess Margaret Hospital in Toronto. Princess Margaret Hosp. treats only cancer patient's. Thank you.

 

acl