11 replies to this topic

[chrissy778]

Haven't posted in awhile was diagnosed with CML August 2013 I have reached MMR and actually have been all zeros for about a year, last 4 visits.. just got a phone call from my Dr saying my PCR is now 0.060 so here I am.. trying not to be a weirdo as I know people have not had the results I have but in the back of my mind hoping I an not going to be resistant.. Knowing this could be hopefully a lab error and trying not to let my anxiety effect my life.. so I come here looking for reassurance and people to tell me this is normal.. sorry I am needy and trying not to go there..because I know if I do I will be there for the holidays and it will ruin the next three months of my life ughhh

[scuba]

Hi Chrissy,

 

No worries - it's lab variance. You'll be all zero's next test. To put your mind at ease - ask your oncologist for a re-test to verify.

[chrissy778]

Thank you Scuba. . I am on 400mg Gleevec. I was thinking about calling my Dr and asking if I should go to 600mg.. what do you think. Do you think it would make a difference

[chrissy778]

Shit.. never mind just remembered that my white count is very low this would not be good.. Damn it

[Trey]

You have probably been hovering at the cutoff line for the past year.  Your lab likely has a cutoff at .005, or maybe even .00, and this one popped up above that by just a little bit.  Or could be an error.  Still well into MMR.  Re-test helps the nerves, but otherwise not needed.

Edited by Trey, 15 November 2017 - 08:49 PM.

[chrissy778]

Thank you for responding and setting my mind at ease...   and also for putting up with me

[kat73]

chrissy - no need to apologize - I'm sure everybody on here knows exactly how you feel because they've experienced it too. We have all found ourselves at the mercy of the PCR numbers game and it's not irrational.  We're all in uncharted waters whenever the future is the subject of discussion.  And the PCR is all we have with which to steer.  It's in the nature of the beast that the PCR represents our whole world status:  You are fine until you are not fine.  How anyone can manage to live with that measure of instability without a little freakout now and then is beyond me.  The uncertainty of life in general (the old "could get hit by a bus tomorrow") is easy to forget about.  Our situation is not easy to forget, precisely because we have a certain amount of foreknowledge and, because of the PCR, a certain amount of information.  I am scared each and every time I receive PCR results.  I have a little freakout each and every time.  Each and every time I have to give myself The Talk before I open the email.  Because I know one thing is true:  we (lucky ones who are responding) are fine until we are not fine, and that news will arrive in the package of a PCR.  Trey are Scuba are almost assuredly right, but I agree you might ask for an earlier re-test so you can enjoy the holidays.  Upping the Gleevec will probably ensure you have horrible holidays, however!

[ROMO]

If we all had those numbers, none of us would be sick.

You still got it beat. Your a winner!

Keep up the good work.

 

romo

[thatguy]

Check my signature, the results can vary pretty significantly. Don't stress. I'm guessing if you're on the Gleev, you still have 4 viable options on the table anyway, worst case scenario. That's pretty sweet.

If you're me though, try to recount any dietary or supplement changes in the recent months in the meantime.

[tiredblood]

Chrissy778,
I don't have much to offer, but breathe, girl, breathe. There are so many more people on here more knowledgeable than me. I feel so inadequate. I'd probably freak out too, even if all was well. I'd say find a way to serve others to keep your mind from imagining all sorts of things.

I have no idea why all my "I" appear as little boxes.

Just know we're all pulling for you. Look forward to celebrating your next good numbers with you.

[chrissy778]

Thank you everyone. You all are really great friends to have. I feel thankful. Your support is is so helpful and appreciated

[Gregda]

Chrissy778  and Everyone,

I'm s 15 yr survivor. Been on 400mg of Gleevec/Imatinib for 13 yrs, mostly on a 400mg day1 then 600mg next. My Dr is assessing IF I might reduce dosage since I've been in undetected range for 5 yrs.  A book I found encouraging is: ' The Anatomy of Hope  ' written by an Oncologist from Harvard. In it he retells his 30+ yrs of treating people with cancers, and his own personal experience getting diagnosed.... and what helps him and his patients !