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Detectable after being non?

Advice needed.been undetectable for 7 months now detectable again at low level.Has anyone else had this and should I increase my dose of Sprycel?bit upset but just needed share and any advice greatly appreciated.

Tanya

Hi Tanya,

You should try not to worry until you have at least 2 clear results that show a rise in the % of BCR-ABL1. Your current 'positive' result may be due to a number of reasons - eg to do with the particular sample tested and/or possible contamination of that sample, and/or the level of the normal 'housekeeping gene' (ABL1, BCR or GUS) present in the sample tested.

That is why you need to wait for the next result at least. I assume this last test was done at the same lab as your others?

You say you are now detectable but 'again at a low level' but do not give any numbers. Until you see a clear upward trend in your PCR results, I would say there is no need to either increase your dose, or take any other action.

Sandy

 

Thank you so much Sandy,you have given me peace of mind so will wait and see how next bloods are. I have no idea what my numbers are as my Haemo is so hard to get any details out of but with next Tele call will try get them.This is a most helpful site and I am grateful for it!

 

Tanya, I have seen quite a few posts like yours over the years, and as far as I remember none of them have actually been a long term issue. Very low results (less than 0.01%) turn up occasionally for most people who have been undetectable. There were quite a few similar posts I think about 5-6 years ago, when some labs had got more sensitive equipment and could detect a low level which had been out of range with older instruments. Ask the doctor if the lab have a got a new shiny toy to play with - that could be your low positive right there. And if they have a new toy, ask the doc to confirm that they have done a calibration and are reporting numbers against the International Scale. If nothing else definitely get your BCR-ABL numbers - they are your results, not the doctors.

I have been undetctable and then my last result read "too low to quantity." My hematologist said that sometimes there is a tiny upward bounce and to not wast any time worrying about it.  My next draw is May 16th. 

Thank you for that Alastair,I feel quite uninformed still about CML,despite reading heaps about it,and my Haemotologist doesn’t help as she seems to just give me the most basic information...I will see what my BCRABL is,and won’t stress about it so thanks heaps for your post,it has eased my mind further:)

Thanks for sharing that Rick,good to know others experience same...