7 replies to this topic

[janner25]

I went to the doctor today for my 12 month PCR results.  Not exactly the news I was hoping for...I was expecting the big ZERO.  My 6 month PCR results showed .002% detected...so I think it is natural to expect my 12 month to be zero, right?  Well...it wasn't.  I was the same as my 6 month visit: .002%.  I know that that is AWESOME...but in my mind...I had fully expected zero.  So feeling a bit deflated.

He asked how I was feeling...said I am living the 'new normal'.  Some days are better than others.  Fatigue biggest complaint; occaisonal leg aching, particularly at night; few rashes.  But nothing that I'm not used to at this point (although the leg aches are newer).  I did express how the cyclical part of the 'new normal' is just frustrating - not knowing how I'll feel each day.  But it is the new normal so I need to accept it as that.

So...moved to labs every 2 months; PCR every 6 months - see him in 6 months.  And that's it!  Hoping that the 18 month PCR gives me what I expect....ZERO!

(Please excuse my less than positive vibe...I know I'm doing well...but its a numbers game.  You expect to see ZERO...)

[hannibellemo]

Janner,

I'm sorry you didn't reach a goal over which you have no control, other than to make sure you take your TKI every day!

Please try and adjust your attitude as fewer than 15% of us at this time reach PCRU. There are no studies that indicate reaching PCRU (correct me if I'm wrong Trey or Phil) is any better than reaching CCyR or MMR to remain progression free. You probably will reach PCRU someday but why torture yourself? Be happy with your current and excellent results!

I don't expect to reach PCRU. I prefer to torture myself over remaining MMR. To each his/her own poison!

Pat

[GerryL]

Sometimes I wonder if knowledge is a good thing, when my Hematologist told me I had reached MMR, I wasn't as excited as I expect he wanted me to be as by this time I knew about the elusive PCRU. But at PCRU you may still have those pesky leukemia cells floating around in your body even after a number of years.

If I've read some of the abstracts correctly as long as you're able to maintain a CyCR or better for the first couple of years everything should be okay. The mutations are expected to make an appearance within that timeframe.

[Happycat]

PCRU should not be your major goal, since Pat is correct, few of us will get there.  Getting to MMR is the goal in terms of progression free survival. You got there in 6 months, so that is fabulous.  And you maintained it, also fabulous.  Think of PCRU as icing on the cake, or added gravy, (not on the cake though, that would be gross). 

Traci

[PhilB]

hannibellemo wrote:
I'm sorry you didn't reach a goal over which you have no control, other than to make sure you take your TKI every day!

Given those results PCRU is entirely within your control - just switch to a less sensitive lab !

[janner25]

Thanks everyone...

I always thought that I'd get to PCRU since I got to where I did in 6 months...but I'm super grateful to be where I am now. 

I mentioned my results to one of my friends and she said the same thing Phil...she said move my decimal over and it's zero!  So hooray!

I also was hoping to be at zero because I would like to try to be one of those guineau pigs who in a few years can be taken off the meds.  Knowing there are other meds out there besides tasigna, if the CML rears its ugly head again, I know I'd be OK.  But would like to try.  My doctor likes the PCR number 0 to even begin discussions of that...and although I know I have years ahead of me with the meds...was hoping to start the zero timeline.  He had a resident with him yesterday and brought it up (I think for the resident's benefit)...and said easier conversation if it were zero...but said he felt confident that I would be a good candidate since I'm faithful with labs and seeing him.  But won't be, if at all, for a few years.  At least he's open to it.

Thanks again everyone - sorry if I sounded ungrateful - definitely not ungrateful.  Very happy to have that little in there.

[CallMeLucky]

At least you are being honest about it.   Everyone wants to be PCRu but all the studies show as long as you get to MMR you should be good.  The reality is we want zero because if we don't see zero it means cancer cells are still there.  We know if it is zero that they may still be there, but if it is not zero it is definitely still there.  And, if it is definitely still there then the dream of stopping treatment some day seems so much less likely.

The reality is that even at zero the odds of stopping the drug today is still on the low side.  There is a new STIM trial starting up and the great thing about this one is that I believe they are looking into the possibility of people staying off treatment even if they become detectible again and seeing if the body can keep it in check.  For most of us stopping treatment will require something else besides TKI drug.  I'm hoping the hedgehog trials that are starting up show some promise.

One other thing, there seems to be a discrepancy between the "few" who reach PCRu according the the trials and the seemingly larger percentage of users on the forums who claim to be PCRu.  I see quite often people who right "yep, I was diagnosed six months ago and now I am PCRu (or more often "I'm in complete remission")".  While it is possible more people are getting to PCRu, or maybe there is a higher percentage of online users who get there than the regular CML population (hmm maybe internet use kills CML cells, it seems to kill brain cells so why not CML cells) more than likely I just can't help but get the sense that most of these people just don't know what they are talking about.  Either way, as my doctor says, which always pisses me off because I know she is right, "what difference does PCRu make?  We know the test is not accurate enough to detect below a certain level so even when you are PCRu, you're almost certainly not "cancer free"".

Glad you got good results and I suspect over time you will eventually get below that detectable level.

[GerryL]

Hi janner25,

I can understand where you've coming from. I got to negative in 15 months - but now I wait to do my next test in 5 months to see whether it was just a blip in the testing. If the negative continues on, then I'll look at talking to my doc about a dosage reduction in two years. Though I don't suffer side effects from the Gleevec as badly as some people on the board, I would like to reduce the ones I have.