31 replies to this topic

[Buzzm1]

it seemed to take an inordinate amount of time for me to receive the result back from my last PCR test

 

my anxiety increased so at my request my Onc was going to contact the testing lab in the a.m.

 

the result finally showed up the a.m. 11 days after my blood draw

 

it was all good news .... PCRU after being on a decreased Gleevec dosage for 6 weeks

 

but after having read countless accounts here of testing problems that got me thinking

 

when was the sample tested relative to the blood draw

 

I contacted my Onc relaying:

 

On the reduced Gleevec dosage, I need just a little reassurance on the test results.

An all too common occurrence among the LLS forum CML patients is having to retest due to the blood sample not being processed in time.

Posted by Trey: "A PCR should ideally be run within 24 - 36 hours of blood draw. Most labs will process the samples up to 72 hours after drawn. Freezing works well, but most labs will not allow frozen samples. If stabilization chemical is being added to your sample the timeline can be extended. The report takes longer than the specimen processing, so you want to know how old the sample is when processed.  

What does the lab consider to be acceptable timelines for PCR processing, what days do they perform the PCR test.

 

the reply back:

 

Dear Mr xxxxx, you ask such good questions 

Here is the instruction that our genetics lab has given to the lab staff: 

DRAW blood SUNDAY through THURSDAY ONLY. Keep Blood on cold/blue pack (preferable) or WET ice (DO NOT FREEZE). Send to reach Genetics Lab within 48 hours of blood draw.

 

so now the only question is:

 

once the testing lab receives the sample, how long before they process it?

 

fortunately I know the Kaiser blood lab sends samples to the testing lab every day but it's still better to donate in the morning so it gets to the testing lab the same day.. traffic here quickly becomes atrocious starting at 2:30p.m. and the testing lab is on the other side of town, 20 miles away. .. visualize creeping stop and go traffic on the freeway

[ksh]

I don't know if I am in the correct place to post about my situation.  I had previously been treated for elevated IGE >4,000. I recently had an episode where I thought maybe I was having a stroke and walked into my G.P.'s office and just said I am not feeling right. My face was tingling and was having trouble talking and thinking, my hands were tingling and I was not able to move around properly.  I was told I was having a panick attack and to go home and take a clonazepam.  Upon return of blood workup hypercalemia with hypo parathyroid.  I was called back into the office and it was explained to me that they were going to do more bloodwork and depending on that result maybe a PET scan.  It has been over a week and no response on the second round of bloodwork. 

I feel very scared and lost.  I don't know to seek out another doctor for another opinion and even where to find one and what kind of doctor to see.  I have severe bone pain but was told it was from degenerative disc disease and arthritis.  I just turned 42.  I have been suffering from migraines for over a year and get horrible vertigo and vomiting so I have been under treatment for the diagnosises.  I have done some research and seems this all fits for IGE Myeloma.  I had blood in urine a few times on urinalysis and afraid my kidneys are not doing well.

So, there still is no treatment for the symptoms I have been having and find that a bit inadequate treatment.  Fatique and pain is getting the best of me while I just wait for results.  I truly appreciate any help or guidance.  I am new to the website and it seems to offer alot. 

[Trey]

ksh,

You are not in the right place.  Elevated IgE is most often skin or allergy related but we cannot help with that.

 

If you think you have some type of L&LS disease try here:

http://community.lls...or-a-diagnosis/

[gerry]

In Australia, it can take a couple of weeks to get the results of the PCR test back, mainly because the results sit on a few desks. 

[chrissy778]

I received my PCR results on paper that I requested from my doctors office. I am so upset, it says collection date 02-24-2015 Received date 03/04/2015 Then report date 03/06/15 This means it sat 9 days. Also says Bcr-Abl1 fusion I would think that means the control gene used, not sure.

 I called my doctors office and am waiting to hear back. Does this mean that my PCR is actually higher then the report says it is.  It came back 0.026% I called the lab they said yes this is true about the dates and I need to take it up with my Dr office. They also said they do not freeze samples or do batch testing. They also said they never turn a sample away but with my report there is a disclaimer saying my sample was compromised. Seriously? I feel my drs office should have had me come back in and had another sample taken. I was totally unaware of any of this. I had asked for a copy of my PCR results because I thought the number was different then what my dr told me three months ago and wanted to double check. Then when I see the dates I was like, well you can imagine what I thought. And I would not know any of this if it was not for Trey sharing his knowledge. Ok and the part that I am really confused about is my Dr called me On March 2nd and told me my result was 0.002 I know this for a fact because I wrote it down and wrote a post about it on my Facebook. How could they not receive the sample till the 4th and the report date says the 6th but he called me on the 2nd. In the office I said I thought it was 0.002 and he said it changed because they are using the International scale now, every copy says IS they always used the IS. I will keep everyone posted what I find out. I have a feeling I got someone else's results when I got the 0.002 And he called me with the result I did not call him.....

Edited by chrissy778, 20 May 2015 - 06:06 PM.

[mlk210]

Buzz - Is there a phone number to the lab on your paperwork? This happened to me this last time. I went in a week early for my blood to be drawn and then I follow up with an appointment with my onc the following week. When I went in the next Monday after my draw (7 days later), the office didn't have the results. My onc came in and told me he talked with the lab and actually told me I was undetectable which he was surprised about since I'm only 9 months into treatment. He said the paperwork would be sent over that afternoon and I can call the office to get a copy.

 

After a long process I got the paperwork and not only was I NOT undetectable I had gone up a smidge from my six month test. I was then worried like you mentioned from reading here if they didn't run it until that monday, it's inaccurate. Then my mind started going crazy because that means I'm even higher. Anyway, I called the lab and asked when exactly my blood was ran. They were very nice and asked for my birthdate and name. The call took less than a few minutes. Not sure what took the lab so long to get the report to my oncologist and I still hope the lab told me the truth, which was it had been run the day my blood was drawn. 

 

Note: My onc never called me after he signed off on the PCR paperwork to say you aren't undetectable. Which frustrated me, so I'm going to a new onc. I had already been contemplating it from the disorganization of his office. This was the last straw. 

[Lucas]

I received my PCR results on paper that I requested from my doctors office. I am so upset, it says collection date 02-24-2015 Received date 03/04/2015 Then report date 03/06/15 This means it sat 9 days. Also says Bcr-Abl1 fusion I would think that means the control gene used, not sure.

 I called my doctors office and am waiting to hear back. Does this mean that my PCR is actually higher then the report says it is.  It came back 0.026% I called the lab they said yes this is true about the dates and I need to take it up with my Dr office. They also said they do not freeze samples or do batch testing. They also said they never turn a sample away but with my report there is a disclaimer saying my sample was compromised. Seriously? I feel my drs office should have had me come back in and had another sample taken. I was totally unaware of any of this. I had asked for a copy of my PCR results because I thought the number was different then what my dr told me three months ago and wanted to double check. Then when I see the dates I was like, well you can imagine what I thought. And I would not know any of this if it was not for Trey sharing his knowledge.

 

 

Chrissie, i passed throught the same situation: they ran my pcr 8 days after the sample was taken and i had a low result. i january it happend again: pcr after 3 days. not cool. i running my pcr in another lab, not so sensitive as this old one, but the sample arrives at the time. that's the reason we have to look for the trend and not for a particular result. in august i'm going to have a pcr at the most sensitive lab in my country and hope for great results like i'm having now. good luck!

[Buzzm1]

Buzz - Is there a phone number to the lab on your paperwork? This happened to me this last time. I went in a week early for my blood to be drawn and then I follow up with an appointment with my onc the following week. When I went in the next Monday after my draw (7 days later), the office didn't have the results. My onc came in and told me he talked with the lab and actually told me I was undetectable which he was surprised about since I'm only 9 months into treatment. He said the paperwork would be sent over that afternoon and I can call the office to get a copy.

 

After a long process I got the paperwork and not only was I NOT undetectable I had gone up a smidge from my six month test. I was then worried like you mentioned from reading here if they didn't run it until that monday, it's inaccurate. Then my mind started going crazy because that means I'm even higher. Anyway, I called the lab and asked when exactly my blood was ran. They were very nice and asked for my birthdate and name. The call took less than a few minutes. Not sure what took the lab so long to get the report to my oncologist and I still hope the lab told me the truth, which was it had been run the day my blood was drawn. 

 

Note: My onc never called me after he signed off on the PCR paperwork to say you aren't undetectable. Which frustrated me, so I'm going to a new onc. I had already been contemplating it from the disorganization of his office. This was the last straw. 

 

mlk210,

 

I don't receive the paperwork from the lab ... I only receive an email from my Onc containing an abbreviated summary of the lab BCR/ABL finding.

 

For our collective benefit, since testing time of the blood sample is of the essence, testing labs should chronicle their receipt, and testing, with that information provided to us.

 

Good luck with your new Onc.

 

Buzz

[chrissy778]

Ok, I am a boob, not really but here it goes... I just talked to someone at the Integrated Lab. He was awesome and explained this, the 0.002 result is from the Ny office and the sample was done on time the next day 02-25. The Ny office does not use the International Scale. They then sent it to the Arizona office ? They (Az) received it on March 4th and they do use the International scale and that's when it came back 0.026. Can someone please tell me what the 0.002 would be if you transferred it to the International scale. Thank you  And is this normal to go to another lab so far away. I live in Ny sadly I know

[Trey]

C,

Since the NY lab does not use IS there is no answer to your question.  Each lab must develop its own IS conversion factor based on historical results.  The conversion factors for labs are all over the map, so no way to know.

 

As to why the NY lab would do a PCR then send the specimen on to another location when they must know (elsewise they are boobs) the sample will be totally degraded, that also is unknowable except to describe it as terminally stupid.

 

And regarding why the AZ lab actually PCR'd the rotten sample of goo: "stupid is as stupid does".

Edited by Trey, 20 May 2015 - 07:59 PM.

[chrissy778]

Thank you I will post what I learn when I hear from the office... Sadly my blood work the last 3 times have been done the same way.  I will hopefully get a phone call back tomorrow. The man from the lab said the NY test was qualitative and the one in Arizona was Quantitative does that make more sense?  Never mind I just read your blog and seen the definition of the two, so I answered my own question. No of course not.

[gerry]

Wow 3 months - my next blood test is in 2 months time.

[DebDoodah22]

I live in the middle of Texas - my draws are sent to a lab in PA...and the results are available to my onc within 7 days....I never thought about that being a problem. Is it?

[August1]

Hello,

I think something similar happened to me as well. I've historically been a slow-and-steady responder. On my last PCR I think I had the blood drawn on Wednesday or Thursday. I got the results the following week and it stated that I was PCRU even though I was still at 0.2% (IS) six months prior. I was very happy to see this but something in the back of my mind makes me think that they took too long to process the sample. I am going to ask for a copy of the report and always have blood drawn on Monday or Tuesday going forward. Either way next test will tell me for sure, but I guess that's always the case. 

 

Take care, 

[Gail's]

Buzz, my lab tech for Kaiser called the process center to find out for me if the samples were batched and only processed on a specific day, and my process center runs them daily but still wants them drawn only on Monday-Thursday before 230. I asked and found out that specimens have the preservative as well as being on ice for transport to the process center.

Often the delay in getting any test result is how many people have to interpret the results. And having done this for other tests my docs at work order the office can usually call and have the results read the same day or day after it's done. If results are slow in coming, have your doc call and get them read a day or two after the blood is drawn. The office can at least call and find out what's causing the delay.

[Gail's]

Oh, and at both providence hospital system and at kaiser, the time of results is documented on the report so you can ask for that. At least with those two health care systems.

[chrissy778]

(Update) So my Dr is not as nice as I thought he was. When he returned my call he sounded annoyed as soon as he said hello, and I could tell he was not happy. I explained that it was 8 days since blood draw to time of testing and the office should of received a letter saying my blood sample had been degraded and compromised from what I was told by the man from the lab. I told him I was concerned that my number was not accurate, his answer and I quote " We are talking February? There is nothing I can do about that now. Would you like to speak to someone in the lab" Meaning his office lab. I said yes and while I started to tell him I did not mean to be a pain but, he quickly transferred me in mid sentence....The lady from the lab at his office was very nice and understood my concern, she said she would call the Integrated lab and see what the protocol is and call me back, that was yesterday morning. To tell you the truth I feel sick about the whole thing..... I am at my two year mark and I feel like I really don't know what my progress is. I feel frustrated that my blood is not being accurately monitored and I think its time I look for a new dr. I understand nothing can be done from February but they can look into why it is being sent so far away, and do something about it taking that many days to be tested in the future.   

[chrissy778]

Trey My dr office returned my call and this is what I was told, the 0.002 is the ratio of fusion for the gene transcript. I was also told that the lab sent it from NY to the sister site in Tenn because that's where they get the International Scale done. That's where it said I was 0.026 I was told the sample was refrigerated and they have certain standards with a internal control to check the integrity to make sure it is accurate before testing. Also was reassured that I am still responding well and have nothing to worry about.  I told her about the 48 hr 50% depreciation time that refrigeration is not good enough and I am not ok with 8 days before testing. She wanted to know where I get my information from and I told her a leukemia site.  Also guess what my blood is still sitting here in NY from Monday waiting to be shipped out to Tennessee and its Friday. I found that out today on my own from calling the lab directly my self. The office is going to look into it more and call me next week. I feel as though I might have brought the testing delay to the attention of the office, not only for me but for everyone. I feel good that I advocated for my self and I knew what the criteria is for testing. Thank you for this site.

[Trey]

There are ways to stabilize blood samples for RT-PCR which can extend viability up to a week on ice, BUT most labs do not use it since it requires special (i.e., costly) processing reageants and techniques on the lab end of the equation.  Here is the largest US lab requirement for BCR-ABL RT-PCR; Note it is very explicit about the importance of the speed of blood delivery:

http://bit.ly/1Bho69X

 

The ways to stabilize the sample are in this article, so you can really piss off your Onc and ask him if one of these methods (such as "RNA-Later") is used:

https://www.lifetech...od-samples.html

[Trey]

Also, there is another possibility which your Onc may not understand.  The actual PCR may be done in NY where a ratio is obtained, then that ratio is sent to the Tennessee folks where they do a math conversion.  If that is true you can really, really , really piss off your Onc by pointing that out.  Just sayin'  Some of us have more fun with math than others.