9 replies to this topic

[silvia]

Hello everyone, haven't been on here in a while...

was diagnosed with CML in 2001 and have been in Gleevec 400 mg for 9 yrs and then have been switched to Sprycel in 2010 due to resistance to Gleevec, had major improvement regarding side effects etc...now latest PCR shows increase from 0.00006 % to 0.00016...got a call from onc office, that bothered me alot...was asked if the increase was due to skipping meds, or if I was taking new interfering meds...since that is not the case, they made it seem like this was alarming and needed to be monitored more closely and have another PCR soon, and if results would not improve, switching to something else should be discussed.

Has anyone else had this problem, and has been taken off Sprycel ??

Your input would be grately appreciated!

silvia

[Sneezy12]

These values are essentially the same. What was the resistance to Gleevec? Regards, Frank

[silvia]

Frank, that is how it seems to me tho...but they put it like I was not seeing next christmas...it is not considered molecular remission anymore...

Gleevec didn't work anymore, values went up the more test they did, and rather than experimenting with dosage, was switched to Sprycel.

Would you say the above values with Sprycel are not as alarming as they want to make me belief?

Silvia

[Sneezy12]

They are not alarming. If you are concerned, just repeat the bcr/abl in 4 weeks. Frank

[hannibellemo]

Silvia,

Those are very small numbers, both of them. Perhaps you are no longer in complete molecular response (response is the term used, remission is misleading), I don't know what number your lab uses for PCRU, but you are still way below a major molecular response (.1%) and that's considered a darn good place to be, too. You may have been just below the undetectible level and now you've popped up into the detectible level. It happens all the time. Next time your response may deepen and you're back into PCRU.

I'd suggest to your oncs that they take a chill pill and quit freaking you out when nothing that has just happened is earth shattering!

Good luck!

Pat

[Trey]

Most labs would not even report such low numbers.  You would need to lose about three more decimal places before it would be a real problem. 

[silvia]

I am beginning to think that whoever called with the results, wanted to look very important...

I hope my oncologist will see this the same way once I go in...

Thanks everyone for your encouraging replies!

Silvia

[0vercast]

I believe that change is well within the margin of error. No worries.

[Tedsey]

As with my experiences, oncologists do not always understand the numbers well, esp. if they are not all that acquainted with CML.

Tedsey

[silvia]

I just hope that either the lab was off a little bit, or another PCR shows improvement, or the medical assistant who called made an elephant out of a fly there...wish me luck everyone, I am going in friday!

Silvia