12 replies to this topic

[abra]

Hi Everyone,

I've been "lurking" here for about 18 months now, since I was dx'd in Feb of 2012. Today I got some shocking results from my latest PCR test and I was hoping someone could say something to talk me off the ledge tonight...LOL (sorta)  So I had a totally normal biopsy in March of 2013 and was PCRU for the first time in May of 2013. Also, I was MMR after 3 months of taking Tasigna til May of 2013, when I went PCRU. From 2/2012 to 5/2013 my doctor was using Labcorp. For this last PCR, she switched to Quest and now the results said I was back up to 15!!!! My doctor thinks this must be some kind of mistake and I went to the lab straight after the appt and got it retested, but I wont get the results for another week. This has got to be a mistake right? How can I go from undetectable to 15 in three months after being MMR for the last 12 months?! I"m so frustrated right now... This has got to be a lab mistake right?  The phlebotimst assured it me there was no mistake of course,but how can she be so sure?  Has anybody has this happened or I am the first?.......

Any insight into this would be SOOOOOO appreciated!!!

Thank you!!!

[tanya]

I was diagnosed with MALT NHL last month.  The hardest part has been waiting for the results of all the testing I've had.  I still don't know my stage or grade.  I can relate to your frustration and FEAR.  Sorry I can't give you any info on your situation.

[jjg]

Hi abra,

My first instinct is that there is an excellence chance it's a lab error but you're doctor has done the 100% correct thing in asking for an immediate retest. I wouldn't listen to a phlebotomist re the testing, mine don't even have a clue what a PCR is, they are there to get the right liquid in the right tube while causing as little pain as possible. I could start a whole new thread about the really dumb things my phlebotomists have said to me.

I did progress from PCRU to 24% over a period of 4 months but I was completely off treatment (under doctor supervision). All my tests were from the same lab and believable. I was told that from around 10% and upwards you can expect to start seeing a rise in WBC. Mine never did go high (just upper end of normal) but mine were also that way at dx i.e. at dx my PCR was 87% and my WBC only 13, 2 weeks later and before treatment my WBC were 9, i.e. my WBC respond slower than most. So if your WBC are normal it's less likely that your PCR really is 15%.

I also noticed that I was not feeling totally healthy when the PCR rose to 24% (random fever, bone pain, more tired). You are still on treatment and tasigna can cause all kinds of symptoms that a "freaked" out person can interpret as relapsing so it's probably not too useful to think too much about how you are feeling... unless you feel fantastically well in which case it's a good sign.

It does totally suck having to wait for these tests. I have to wait 3 weeks for my PCRs, including at dx! There is not much to be done except to keep living life as best you can. All the best!!!

[GerryL]

Hi abra,

I wonder did changing labs have something to do with it in regard to the accuracy of the tests. We had someone here in Australia who wrote on another forum that the latest test results for her son went up suddenly, it turned out to be that the lab upgraded its equipment to a far more sensitive one. It could also be that Quest is set to IS readings which can appear to show an increase in your levels as opposed to the other lab which may not report the same way.

[CallMeLucky]

Quest is definitely reporting international scale so if your last lab was not IS that could be an issue.  However you stated you were PCRu so regardless of IS, negative would have indicated a level much lower than 15 on IS.  BTW I am assuming your result is 15.00%, if something else please clarify.  It would be very strange to see someone go from negative PCR to 15.00% in three months assuming they were still taking meds.  It would seem that it is likely a mistake.  I wouldn't put much value in what the phlebotomist says.  I had a phlebotomist who used to tell me every time I would get my blood drawn about someone else who died from leukemia!  You know, because that is what a patient fighting leukemia wants to hear.

[deborah53]

Hi all,

I too have been lurking in the background and reaping the benefits of all the great insights shared here. This post really touched a nerve because I have just experienced a similar issue. A little background- diagnosed in Sept 2011, and on Tasigna 300mg twice a day. I have been MMR since the 9 month point. I am extremely compliant with meds, and I am a clinical research nurse. I use LabCorp, and it takes a minimum of 10 days to get results. Every 3 months it is a stressful experience waiting by the fax machine to find out if things will be OK or if I will be freaking out. Listening to Trey's posts on the importance of CCR as a benchmark, and not getting too strung out about minor changes in PCR has helped... but when you see a trend up, it is still your problem to deal with.

Recently, I had a trend up in one transcript -b3a2. It went from undetectable to .008,.009,.021. I know these are really low numbers, but my oncologist and I were concerned that it was a pretty linear rise. We had PCR repeated in one month, and it went back to PCRu. Phew- but not so fast- next PCR after 3 months was up to 1.966, and I had lost MMR for the first time in 12 months. It was frightening!! We had it retested one month later (just last week) and back down to PCRu. This is nuts! I am relieved, grateful, a wet noodle, but I feel that I need an explaination as to how the PCR can bounce around like this. A study needs to be done on the psychological impact on us of dealing with test uncertainty! Any comments would be appreciated. And by the way, when my PCR went up to 1.966, all my labs, CBC and chemistry were perfect and I felt great- it just did not fit. So Abra, I feel your pain. The 15%,if that is correct also does not make sense. I will be anxious to hear if it comes right back down. Good luck with it, and try to stay calm- all the stress does not help our results. Please keep us posted.

[abra]

Thank you so much for your input here everybody. I've been compulsively checking the forum throughout work today  I"m still kinda new to this whole thing and maybe I'm over-reacting. I don't know. Yes, you are right, she said 15.00% And I am TOTALLY compliant with Tasigna, 600/day, every 12 hours. Not to mention, at 41, I'm a complete "health nut". I drink kale juice pretty often, am vegetarian for years, exercise 3-4x per week, work 40 hrs a week, fast one day/week, have 2 little kids, and I've been feeling great.... until now. I was SO happy when I got to PCRU in May, and it totally boosted my health. I felt revived. Yes, It is amazing to me what the stress does to us Deborah53. I got an upset stomach, headache, and went straight to bed as soon as I could after this ordeal yesterday. Not to mention all the bawling in my car...I'm just afraid I guess. Afraid it might progress, afraid the drugs won't work, afraid I'll get/have got a mutation, afraid of another biopsy, etc, etc. This disease is such a mind*&^k!  Sorry for swearing, but it is! It is a tremendous help to know that I can vent here with people who know exactly how I feel. Thanks again everyone. My doctor said she will call me as soon as she gets the new results, probably next Tue or Wed, and I will post them here immediately one way or the other.

with gratitude,

abra

[abra]

Thanks for sharing Tanya. It really does help to know that they're are people here who know my FEAR. Our families/friends probably do their best,but it's not the same as talking with people on this forum. I dont know anyone who has CML or anything like it, so it can get quite lonely. I had to look up your condition. It sounds similar to CML. The first month was so hard for me. It was just out of left field. Such a huge shock...I think I had a 3 month, protracted nervous breakdown!  If you ever want to vent more, you are at the right forum. Please let me/us know when your results come in. And I'll be praying for the very best outcomes for you!

Take care ,

Abra

[pamsouth]

Abra, 

Short Background,  I am 65 years old.  I was diagnosed in 2005 and have been on Gleevec since then, except for a short duration, I tried out 50mg Sprycel, a couple of weeks ago, and did not like them one bit & didn't feel up to the duration of waiting it out.   I went back to Gleevec, at least I know what to expect, don't think I can go thru another change with my ange and other chronic illnesses.

From 2005 until I think 2011 ( I would have to go back thru my labs, but I think that is close enough)  I was going to an hem/onc, who sent my labs for PCR & FISH to GenCorp  N.J.  from where I live in Indiana.  Yep  from very early on, for about 6 years I was PCRU, but strangely my FISH was alway dedectable, but very low.  Then all of a sudden I believe in 2011 the PCR jumped up, I can't remember something like 18 % then maybe it was somewhere around 48%,  retested right away ( you know they are only looking at a drop of blood & lots of things can go wrong from here, Indiana to Gen Corp in New Jersey) anyhow after last labs were retested at Gen Corp, it dropped back down to somewhere around 12 %.   In reality nothing had really changed concerning the CML, only the Lab.  Also Novartis sent me a letter, that they would not pay anyone's co-pays for Gleevec, only Tasingna.  But never the less, instead of changing drugs right away, like the onc wanted me to, I called Gen Corp, they didn't want to tell me anything, but I kept pressureing them with questions, and yes they had changed over to IS.  There were several on the LLS board at that time that were complaining of the same thing.  I thought it was rather strange that I at about the same time as my PCR jumped up and onc was pressuring me to change TKI's and also there were others that were on Gleevec, who also recieved a letter that Novartis that they would no longer pay,  co-pay for Gleevec, only Tasingna, and their labs had jumped up, lots of patients were freaking out.

For me it was not a big deal about novartis paying co-pays, in that my Insurance (so far) is paying all but a very small co-pay.  But it was a big deal when my labs took a sudden jump up, and that I did not want to change TKI's and to much pressure from my onc to change to new/better.  I don't know how onc could possible know newer better.  I think most literature's says long term side effects.... etc... unknow.  I mean you can't know the long term of a new drug that has been out a short time and maybe short clinical trials.  Just my opinion.  

During all that time I didn't know that there was CML Specilist, at a hospital just 15 miles away, who did their own labs FISH & PCR.  Anyhow I changed to the new onc, the new oncologist said he didn't know how I could ever have been PCRU with a positive FISH.  I do know the FISH & PCR are done differently, so it probably  is the managacture and kit, don't really know?  It's funny as I still have strange comparison from FISH / PCR. So there you go, that's the way it works some time, for some folks. 

I have had my FISH & PCR done there, locally, for 1 1/2 years now, the results have jumped around from 1%   to as high as 13 % and the last one in June 2013,  both PCR/FISH were both 3%, so go figure. 

However I don't really worry that much about being dedectible +.  Being 65 years my quality of life is important to be as well, as long as my other organ's functions such as liver/kidneys etc.  My pharmacist will tell me that patients over 65 with other chronic illness should consider a lower dose of whatever.   However Oncologist will always come back and say makes you a bigger risk for other things, such as blast, etc.  Then I say losing my kidney's liver, etc. and quality of life at my age and other chronic illnesses are big deal to me, too! 

I am always mindful of the mother stem cell, one oncologist told me the mother stem cells (from the bone marrow) duplicates 10 to 20 more stem cells, and I don't believe the TKI's ever get that high up to kill those PH+.  I think a lot of things are theory and every one is different as to how the TKI'S work with their paticular CML & body and other chronic illnesses. 

The above is just my opinion and there are others who have many other theories as to the effectiviness and how the TKI' s work to kill PH+.  

PamSouth

[Trey]

Except for the disease itself, the biggest source of frustration and often undue concern is the PCR test.  Although results are measured out to several decimal places, it is subject to significant variations because the conditions cannot be controlled (including elapsed time, temperature, shipping variables, test process variables, housekeeping gene variables, cross contamination, improper procedure, lab errors, to name a few).  Because of that, only PCR trends should be used, which is hard to remember when the test result rises.  And changing labs is also a problem, although you would think the variation would not be so significant. 

PCR tests within the first couple years after diagnosis are the most variable.  There are reasons associated with how the body is adjusting to the medication and trying to rebuild a viable hematopoietic (blood making) system which affects the test results, generally because changes in the amount of the control gene (usually ABL) can occur at a different rate than the BCR-ABL changes.  Since the PCR result is expressed as a ratio of BCR-ABL to ABL, changes in the non-leukemic ABL can  affect the PCR result even if the leukemic BCR-ABL levels remain constant. 

The PCR repeat is the best approach.  Loss of response is not the most likely cause for your PCR fluctuations but does remain on the list of possibilities. 

[CallMeLucky]

Very useful info Trey.  It's simple math yet it never occurred to me to think of it that way in terms of less ABL could increase the ratio even though BCR-ABL might remain constant.

[abra]

Hi all!

I promised an update and just wanted to let you know that in fact it was a LAB ERROR!  I switched from Labcorp to Quest, but they did use the same IS (international scale). So needless to say, I was worried sick for the whole week waiting to find out the results. My dr. said she has a call into the lab to try and find out what went wrong, but I am just so relieved to know that this was an error. My last reading was back down to 0.018, instead of 15.0 !!!!!  Thank you all so much for your replies. I hope this thread can be of some help to others who may come across the same experience. The lab techs told me "they never make mistakes", well, they are "mistaken" again!!   

Take care everyone....

Stephannie

[pamsouth]

Thanks for your update it will be valuable to many other who are freaking out.  It probably happens more than we know for whatever reasons.  I know I was freaking out not only because it went up, but because of the lab report my oncologist was forcing me to change TKI when I didn't want to.  The pressure from it all is taxing on you.

PamSouth