6 replies to this topic

[sharcare]

Why is it SO important to get to a 0.00 PCR?    If u have met the first 2 milestones and remain feeling relatively well at a (lets say) 0.8, why mess w/ changing meds just to get to that 0.00 PCR, when changing a med or increasing dose can cause side effects that leave u in pain and on the couch due to fatigue or even worse, in the hospital?

If I stay on the med I'm on, feel good, can function, go to work, have a social life but have a 0.7 PCR, that doesn't seem to want to move,what risks am I taking by choosing to stay here?

[Marnie]

I think that for many people the zeros are important for peace of mind.  Medically speaking, .000 isn't much different than .02 or .01.

I've been bouncing in and out of PCRu for a couple of years.  It used to bother me much more when I got paperwork that said I was no longer .000.

Since my pleural effusion, my doc and I have come to the agreement that for me, taking 50 mg of Sprycel and hovering in and out of PCRu with fewer side effects is far better than taking 100 mg, having rashes and pleural effusion and maintaning .000.

Marnie

[sharcare]

Well I have only gotten to 0.7 and when they changed me from Sprycel (100mg) to Tasigna (800)  I got Pancreatitis w/in 4 days

[hannibellemo]

Sharon,

No reason that I can think of. We're in this for the long haul and our quality of life is important. As long as CCyR or MMR has been reached who cares? No one has really shown that it makes a huge difference one way or the other.

I'm holding at .02 IS on 50mg. Sprycel and that's just fine with me, but 1.0 would be ok, too. If I attain PCRU that would be nice, but I'm ok where I am.

Pat

[eeyoresusieq]

I transferred from Ohio State to University of Cincinnati and had my first pcr done at university of Cincinnati and doc was concerned that pcr was 0.14 because it was 0.0 at ohio state.  He wants to put me on new meds I said no I want to stay on Gleevec.   I am not concerned about the pcr and I told him thatmaybe tthere's a difference in the labs.  Ohio state sends the test out univ Cincinnati runs the test.  So what are your opinions should I be concerned.  I was on Sprycel and didn't like the side effects.  I will get my pcr retested in 6 weeks.

[Trey]

Changing labs can easily account for changes in PCR results.  The 6 week re-test will show a more clear trend.  If the .14% is Int'l Standard it is not a significant concern. 

[eeyoresusieq]

Thanks Trey I value your opinion.