7 replies to this topic

[Jerry.s]

I am so pissed right now,  my  BCR in May was 0.011. and at that time my Onc said that if I didn't go below 1% he would want to switch my TKI from Gleevec to something else.  So when my next BCR appointment came up and they did't have my results i was very upset. ( the May results were also not in time) They told me they would contact me as soon as they received them.  I called them  almost a week later  and the nurse called me back and said that the doctor said that the result had dropped but they didn't they had gone up to 0.012  On August 8/13/2015 .  Now I know this may not be a big increase but never the less its an increase and the fact that i had to find out after i requested the results in writing two months later is beyond Crap!!!

 

i am so pissed ,  I feel like i have inspect there work over and over.  I need advice on what to do , my other two options are to switch Onc at this Cancer center or Switch to another Cancer center in town that is even busier.  

 

Should I also consider switching TKI if I haven't hit undetected ?  I have been on Gleevec since Sept 23r 2014 

[Antilogical]

A PCR result of 0.012 is statistically identical to a PCR of 0.011.  Both are below 1%.  Looks like you're very stable.  No worries.

[RayT]

My onc has said that as long as I'm consistently below 1%, the Gleevec is working and there is no need to change meds. 

[Frogiegirl]

That would piss me off too! But like Antilogical said their basically the same result. I had to go to my cancer centers h.r regarding a nurse. ...it worked. Don't just vent here do something about it. ..let your voice be heard. I'm glad I did. ..many people came forward after I did;) it changed;)

[hannibellemo]

Jerry,

 

I'm more concerned your onc didn't know that 0.011 is already way below 1.0 in terms of PCR results!

 

Your numbers didn't increase and that is probably why they didn't call you - not a good enough reason. Call them on it and let them know what you expect in the future.

 

I can't believe how long it takes some of us to get these results anyway. The lab is done with them the day they are run - it's not like it takes weeks to run the test, more like minutes.

 

Good luck!

[Antilogical]

Actually, unless there is some emergency reason to get the PCR results immediately, they hold the PCR samples until they get a bunch of them, then a technician has to wait for multiple runs.  My doctor said it's tedious, which is why they normally wait till they get a bunch of them to process, then they load 'em all up and start the first cycle.  Mine have taken anywhere from 5 to 20 days to process.

[August1]

I agree with others here. If you're at .011% or .012% IS it's the same thing and both are MMR. That's a great response. 

[Trey]

You have done far better than most in just 11 months.