HI I have CML for 15yrs in remission for 14yrs-complete cyber-gentic response-0.0000-i was on 600mm of gleevac a day everything was fine untill now--my WBC range is 3600-hemoglobin 11--platlets 11--creatine 1.80-liver normal---so now im on 300mm of gleevac and im afraid if 300mm will do THE JOB OR NOT--my dr is on vacation & i forgot to ask the nurse if i was still in remission--question AM I IN REMISSION--should i be very concerned--ty steven bagliore
First of all well done on 15 years of CML and a great response. 600mg is a high dose, the normal is 400mg and so I am surprised that you have been kept on it for so long really. Reducing to 300mg for many patients does not show a negative impact on results. Indeed there has been a trial in the UK over the past two years where patients reduced to 200mg before stopping, I was one of these people and indeed yes I did see an increase it was very slow and I stayed below 0.1% until month 12.
You do not say when you reduced dose, and without knowing your PCR you can’t know if you are as you say in remission, this is a hard term in its self as many people use it themselves at different points in their treatment. Try not to worry too much it is highly likely your numbers will still be very good, I am sure you will make contact with your nurse and they can give you your latest results.
Congratulations on maintaining your complete cytogenetic response for many years. Your doctor obviously thought you were a good candidate for halving the dose as the trial that Nigel mentioned he was on is currently ongoing - but closed to new recruits.
The trial is called DESTINY which stands for DE-escalation and Stopping Treatment Imatinib Nilotinib and sprYcel. Several members of this forum have taken part and some are still enrolled on it. See the DESTINY discussion thread pinned to the top of this page for their experiences so far.
Data from the first 12 months of the trial has confirmed that it is very safe to halve the dose in patients who have had a stable major or deeper molecular response over at least 2 years and in the majority on the trial without loss of response. A small number did show signs that their BCR-ABL levels were moving in the wrong direction and were immediately put back on the full dose. None of those patients have relapsed and all have regained their previous responses.
Given that you have maintained such a deep molecular response for so long, I am sure you have nothing to worry about.
Sandy
hi nigel-thank u for answering my post u put my mind at ease-ty very much-i hope it works out for u-it takes a lot of balls to go in tha trial program of no GLEEVAC--saw my oncologist today she is leaving me on 300mm but i am getting blood tests every 2 weeks-im now a pin cushion.my liver function came out normal-2 problems WBC low 3600-kidney function creatin level 1.70-so if my kidney level stays the same i will remain @ 300mm if it goes higher 200mm a day-we shall see--by the way she told me im a good candidate for that trial--i hope we both come out of this 0.0000 PCR-BEST REGARDS STEVEN
hi its me again--well so far so good my reduction in dosage seems to work-PCR RESULTS 0.0000--hope it continues-ty all
That is an excellent result for you!
In time, and after holding your response for a while, are you going to consider trying to stop taking imatinib altogether and see if you maintain your response?
David.
