32 replies to this topic

[CallMeLucky]

Just got back from Onc and received ambiguous news on my latest test results.  Trying to keep my head clear but really frustrated.

Since I moved to 50mg of Sprycel I have been doing monthly PCR.  After last result I decided to stop calling for results, I figured I would just see Dr in a month and if anything happened they would call me (note for future reference - they won't).  When Dr came in I was told blood counts were good, we discussed side effects, which have been manageable although certainly still there.  I asked about PCR and told "still negative".  As I was leaving I asked for a copy of the test results at front desk and they printed and gave me results from March, I explained that I wanted results from April.  They initially told me there weren't any but kept looking.  After about 10 minutes they found them and handed them to me, the first line says

Test Results: POSITIVE: BCR-ABL1 transcripts were detected.

It then went on to report a number of BCR-ABL1 ratio: 0.036%!

I asked to see the doctor again.  He apologized and said he had not seen this report that he saw the results in the folder from March that showed negative.  He read the report and said there were a few things I needed to understand.  He said this was not from the same lab the last few reports were from.  He said they switched to their own lab and we are now back to non-IS results.  The notes on the report state that Based on an initial comparison with IS results this result should be "around 0.01% IS or lower - or over 4 log reduction.  Because of differences in lab results this should not be considered an increase in BCR-ABL"

I know my post will get censored if use bad language but I am so (fill in the blank) frustrated right now.

I hate this (fill in the blank) PCR test.

So now I have to sit here and wonder if anything has changed at all or not.  Is 50mg of Sprycel not effective or am I where I always was but this test is more sensitive?  Could it be a false positive?  I hate not having IS comparison, they seemed to do a rough estimate but before I was IS negative now I'm supposedly "around" IS .01%  If I compare these numbers to my old lab results from a different lab that were non-IS it looks like I have relapsed.  I am not going to let myself go there given the notations and the fact I know you can't compare, but I hate this damn test.  Now I need to wait two weeks to get the results of today's draw and see if the number goes up down or side ways.  Dr said he is not going to change anything yet, I should stay at 50mg and wait and see.  Grrrr I want to smash something right now.

To make my stress level even more intense they also drew blood for my PSA today.  It has been 6 months since the last one and if this test result comes back elevated then good chance I have prostate cancer and have to go for biopsy.  Waiting on these test results is going to make me insane.

I am so sick of being sick.

Oh yeah and after Dr appt I got back in my car and my car stereo died.  The slight enjoyment I get from listening to the radio as a distraction while I'm in my car is gone.

"Reality continues to ruin my life"

-Bill Watterson

[Mayra]

Sorry Lucky:(.

These test really do a number on our heads and emotions.  I was feeling the same way last week.   Praying you get good results.  Don't know why they decide to change labs and not say anything.   Keep us posted!!

[TeddyB]

Sorry to hear about this CallMeLucky.

Since they switch labs, its way to early to freak out, i know its not easy, heck mine went up a bit as well last time and those were from the same lab, but lets try to enjoy life and not let a stupid number ruin our day/week, as we know the CML will probably not kill us anyway. (Knock hard on wood). Dont let a small number ruin the big picture as i try to tell myself when my numbers went up.

I will be crossing my fingers and toes for both your PCR and PSA test results to be good, and i will of course toast to your good health with my glass of red wine today.

Please keep us updated.

PS: Why the f%&k did they switch labs all of a sudden? Isnt going from IS to non IS a step back?

[Susan61]

Hi Lucky:  I know how frustrating these doctors and labs are at times.  It does make you wonder what is the true results when these things happen.  Sorry you had such a bad day, but when the results come in they are probably okay, and then you will get frustrated that you got so upset.

    I will pray that your PSA test is good also.  Gary goes tomorrow for his results, and he did have Prostate Cancer, but he is 5 years in remission now.  We are anxious for his results too.

   You are doing good, so concentrate on that till your results come in.  I am sure you will get a lot more responses to your posting, and hope you get some good answers to help you get through this waiting period.

Susan

[ChrisC]

Heeeeyyy Lucky,

You are so beautifully articulate! I clearly see and feel your frustration and disappointment and fear. So sorry to hear that you are being tasked with these challenges, especially all at once.

One thing is abundantly evident: you CAN handle it, despite being sick of having to. Hearing you express the situation so calmly and clearly —  despite the bother of it all — you are obviously bigger than the problems being experienced: you really do have a good perspective on it all.

Nonetheless, not an excellent day . . . I do hope that the test results, as they come in, are the BEST imaginable!

Meanwhile, singing is supposed to be very beneficial, so while the car radio is on the blink, knock yourself out in song, maybe!

And for what it's worth (image found on Facebook):

Take care,

ChrisC

[Ray99]

Lucky,

     Sorry to see you so frustrated about the PCR numbers.  But look at the bright side.  You are still over 4 log reduction on 50mg Sprycel.  Wish your PSA test come back OK.

Ray

[CallMeLucky]

Thanks for the replies.  I'm very annoyed about the lab change.  I knew eventually they were going to switch to in-house lab but it was supposed to be IS, one of the reasons I decided to leave my other doctor was that I didn't like the lab was non-IS (it wasn't the only reason, there were other much more important reasons).  It seemed like the doctor was surprised too.  He appeared equally frustrated it was not IS.  I was tempted to call back and say I want another draw from Qwest to compare, but I am trying to be realistic.  For starters these tests aren't cheap so I can't just run around getting multiple tests to make myself feel better.  No single PCR test result can be used to make a decision so even if the Qwest came back detectable I would still need to wait for another test to plot a trend.  If Qwest says negative but in-house lab says detectable, I don't see how that is going to make me feel much better, in that case there is only one of two explanations - a) the in-house test is more sensitive or the in-house test is giving a false positive.  I think false positives would be a rare event so again I find myself back to waiting on result of second test and if at the end of the day the in-house test is more sensitive, then it doesn't matter if the old one says I was negative - sure "negative" helps me sleep better at night but we know negative is not really negative so humoring myself by going to a lab that is less sensitive isn't really going to make a difference unless I like lying to myself (actually sometimes I think I would be a lot happier if everyone including myself just lied to me, hence my Calvin and Hobbes quote "reality is ruining my life")

Basically there are pretty much one of three things happening

1) False positive (unlikely)

2) 50mg of Sprycel insufficient and PCR is increasing.  This is very possible, but I'm not convinced that is the issue just yet.

3) In-house lab is more sensitive.  This is probably the case and in trying to understand that I think I also have to factor in that Qwest was sent out whereas in-house appears to have run it the same day, so in-house was likely a fresher sample, which would give a more accurate result.

I'll know in two weeks what I have to do next.  If the number is negative then great, I pretend it never happened and go on my merry way.  If it is around same range then I have to decide what I want to do, stay at 50mg and see if it budges at all over next few tests or attempt to increase and see if I can tolerate a little more Sprycel, maybe try going back to 70mg and see how it goes.  If the number increases considerably (decimal point shift) then I will have to make a bigger decision because that will mean the 50mg is not sufficient and I really need to decide what to do.  I could try 70mg and see if it makes a dent but if my numbers are truly going up at an appreciable pace then I may not want to mess around.  I know 100mg of Sprycel is really hard on me, I could try again and see if I give it more time if things would settle down, but given the chest pain at 100mg I don't know that I would be comfortable staying at that dose indefinitely.  So that would mean I have to think about going back to Gleevec (which I don't want to do) or try Tasigna or Bosulif.  Hard choice there.  Hopefully I won't have to make that decision.  Either way I try not to get too worried about this, maybe a false sense of security but I feel like there are a number of options and one way or another I should be able to get things straight.  I think it would be odd if all of sudden things suddenly began to spiral out of control, but hey I guess you never know.  Still right now the thing that is really weighing on me is the PSA test, for now the PCR is an annoyance, hopefully it won't be anything more than that and really hoping the PSA can be put to rest so I can try to get to a place where I can actually settle down a bit, all this stress is going to kill me for sure.

It's times like this I wish was a person of faith, I think it would be nice to find comfort in something bigger than myself, unfortunately it's just not the way I think, wish it was.

[LivingWellWithCML]

PCR test results have driven me nuts, as you know.  All we can do is control what we can control, so I have officially stopped stressing out about it (for now, anyway).  The lab switch and move back to non-IS is VERY annoying though, so I can totally understand your frustration.  I am also very picky about that stuff and would be complaining, etc. - I can't help myself.  IMO, the PCR increasing scenario, although possible, is highly unlikely given your previous response on Gleevec 400mg ... Sprycel 50mg is stronger, and you made it past the 2-year milestone where a mutation would've reared its ugly head.  Heck, you'll be fine at a 4+ log reduction, or even a 3+ log reduction.  Sometimes just stress causes a PCR to rise a bit, which happened to me - but I'm sure you will remain stable and at a deep response.

Anyway, you know all of this cause you're more knowledgeable in CML than I am!

And sorry to hear about your car stereo fizzling out.  Sounds like it's time for a NEW car with an even better stereo. :-) :-)

[CallMeLucky]

It is a new car! LOL

[Trey]

A PCR takes a vial of blood, cuts it with a meat-axe, then measures it with a micrometer.  The results are reported out to six significant digits.  Then an Oncologist doesn't read it but guesses what it might have been, and interpolates the results into an outcome consistent with his theory of where you should be at this point in treatment.  It is then converted into log reductions because demons can only travel in straight lines, which is why you see crooked bridges in Japanese gardens.   Repeat every six months. 

[Pin]

Hey Lucky, I'm sorry to hear all of this - sometimes I feel like my own worst enemy when I read my results. Usually once I'm over the initial shock of whatever the test result was, I start feeling better. It's like there isn't anything that would satisfy me except for it to say that it can't be detected. But like you say, the differences in labs can really make that issue problematic anyway. I find it real weird that they've gone and changed back to non-IS. Anyway, I hope your PSA test comes back ok - how long do you have to wait for that one?

[mariebow]

lol  funnnnny!

[TeddyB]

[CallMeLucky]

Well today is a better day.  It turns out I have found a pretty awesome Doctor.  My oncologist (note not my urologist, my oncologist) knew I was really stressed about the PSA test.  He just called me and said he was checking the system watching for the results to come back and wanted to let me know that it dropped to 1.6.  While nothing is 100% the downward trend into normal range suggests I very likely do not have prostate cancer.  He said he just wanted to let me know so I would have one less thing on my plate.  He said he is going to keep watching for the PCR result and will call me when they come in.

I tell you it is so easy to become disenchanted with the world of medicine.  Between over worked doctors, busy hospitals, high cost drugs, and dealing with insurance companies it often feels like everyone is against you.  I am profoundly impressed by this man's kindness.  The two minutes he took to call me saved me 7 days of anguish and stress.

I guess my lucky rocket ship underpants did help, apparently the trick is to wear them everyday!

As always, I thank all of you - my virtual friends for your support and friendship!

[janne]

Lucky,

You are so funny as well as well-spoken. I too am relieved that your oncologist is so pro-active on your behalf. We all do know that these issues weigh on us and sometimes the non-onc doctors are the ones who do not do their best to relieve us of our fears.

So whether it is your lucky underwear or the fact that you remember to bring treats to your onc office, we are glad to hear this story of your kind doctor.

I hope everyone has a "kind doctor" moment in their near future.

[jjg]

CallMeLucky wrote:
I guess my lucky rocket ship underpants did help, apparently the trick is to wear them everyday!

Please tell us you have multiple clean pairs! Or maybe we should just close the subject there and be glad this is an on-line forum :-)

Otherwise great news!!!

[Trey]

Actually, a guy can get four days out of a single pair of underwear.  You wear them once normal, then next day turn them inside out.  Then trade with a friend and repeat.  Four days, no problem. 

Groucho Marx would have said "Is that a magic rocketship in your pants, or are you just glad to see me?" 

Maybe jjg was right about the subject.......what was the question????

[pammartin]

Hi Lucky,

Switching labs plain sucks.  Results are not productive and moving from IS to non IS, sometimes without even knowing unless like you said, you ask.  I have been switched three times for labs in the past year.  I just had my latest PCR test done Monday, I should know by 2nd week of June.  This is yet another new lab so I am also not calling for results.  I can't add anything to make you feel better but I can say I relate to your situation.  My insurance no longer covers the PCR or the BCR/ABL tests but the oncologist office found a lab that pays for the BCR/ABL test for one year.  I have 8 more months before I have to worry about that.  We all have our private Hell, hate the disease.

Glad you found answers, your doc is excellent, and your testing results were positive!  Keep those lucky rocket ship drawers on, they are working.

Pam

[pammartin]

Billie,

There is NO WAY you or I could even think of wearing rocket ship underwear. With our luck they would explode on contact!

Pam