Advanced Member
Posted 26 September 2012 - 08:16 PM
I have only myself to blame. I had a blood test & appointment the day after Labor Day. It was 6 months after the start of treatment, and I was anxious to see if I reached MMR. (I was close at 3 months.) Well, the normal lab values were there for my appointment, but ... MY PCR TEST GOT LOST!!! AAAAARRRRRGGGG!!!!!! This happened at a very highly regarded cancer center, too.
Lesson learned: Never schedule an appointment near a holiday.
Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.
Rx: 03/2012-Gleevec400. Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).
Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.
Advanced Member
Posted 26 September 2012 - 08:33 PM
...and never buy a car built on the day after a 3 day weekend.
Guest_billronm_*
Posted 26 September 2012 - 09:59 PM
Oh boy, you must be beside yourself. We hold our breath every month when we get bw when we are first dx. But to lose your pcr results so soon in treatment Uggg. I think you should go back and throw a temper tantrum, and stay there until they find your test results.
I learned a big lesson 2 years ago, after a 5 week break from Gleevac my onc started me on Sprycel. I was nervous about being off my med so I started the Sprycel 2 days before thanksgiving. Stupid, stupid, stupid! I got the Sprycel headache and I was flat on my back for 3 days, I was so sick. We had to call my family and cancel dinner. My husband Ron cook the whole meal, and him and our Cocker Spaniel Annie sat at the table and had thanksgiving dinner all by themselves. He even lit the candles. I was so mad at myself, I couldn't wait 3 lousy days to start the Sprycel. This stupid cml makes us paranoid. But the meds do work, so try not to panic, after all your 3 months tests showed inprovement and I'm sure these results will be even better. Billie
Advanced Member
Posted 27 September 2012 - 11:19 AM
Sorry to hear about that Antilogical. For the cancer center its just a "lost test", but for us, its more days/weeks of "endless" waiting while we try to think positive thoughts, but are really only interested in those damn results. At least for us who are in the early stages of therapy, i am having my 6month pcr in 4 weeks.
Member
Posted 27 September 2012 - 10:19 PM
I know the feeling...went dutifully in to my regular lab to have my PCR drawn on July 31st. The next week I was on vacation so was going to see the doctor when I got home. Got called by first the lab and then my doctor's office while I was out of town."can you please come back in...we did the wrong test.." As I was able to piece it together later, first the phlebotomist did not draw the right vials, next it went to a lab in my state that does not do PCRs instead of Mayo (where the last how many samples had gone??? ) and they did a FISH test. OF course it was zero ! Funny thing (not really) is that a little over a year ago, they did the same thing, sent the blood specimen to a local lab instead of to Mayo, did a FISH instead of a PCR...it was zero then too. Ever since LAST YEAR, I ask all the phlebotomists when they draw me, "now you ARE drawing a PCR to go to Mayo, right? " Oh my gosh ! But the kicker is they want me to pay my 30% portion of the bill..for doing a test that is absolutely of no value to me...my FISHs have been zero for quite some time....we don't do FISH on me anymore !! We (myself and the hospital ) are still discussing this.....I don't know how much more of a screening process I can do...I am only the patient ! When they say, "yeh yeh" when I ask 'is this a PCR', even tho their answer was somewhat halfhearted, I sort of believed them ! Yikes !!!
Dx'd: 8/2008. Started Gleevec 400 mg 11/08.
Drug break 2011.
Started Tasigna 4/11 450 mg.
Reduction to 300 mg Tasigna 1/2012.
PCRU 9/2012.
12/2012 Detectable.
PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)
12/2015 ? slightly detectable at probably less than 0.01% per Mayo Clinic.
4/2016 PCRU. Still at 150 mg Tasigna.
CESSATION: stopped treatment 7/20/2017.
9/6/2017: barely detectable at 0.01%.
12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.)
12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.)
Guest_billronm_*
Posted 28 September 2012 - 02:10 AM
Dear Janne,
You can use my new four letter word UGGG!!!!!!!!!!! Luv Billie
Member
Posted 28 September 2012 - 12:29 PM
Is the test reported electronically? If they just lost the hard copy, it is stored electronically. Did they not take the right test, or send it to the wrong place.
PamSouth
PamSouth
Advanced Member
Posted 28 September 2012 - 06:55 PM
Hi: First I would make them do it all over again, even though you have to go get poked again. I would not trust that result at this point. First doing it after a holiday, it could still be sitting in a tube somewhere with no test being done on it. I would want a new fresh draw to be sent out at their expense. I have seen so many stupid mistakes made in all of these places, and it scares you sometimes. Good Luck
Susan
Advanced Member
Posted 28 September 2012 - 07:37 PM
They have been unable to find ANY copy of the test. Thinking back, the tech seemed a little flustered that day. I specifically asked the onc & the physician's assistant If they were doing a PCR, & they both said YES. The onc said "I'll be looking for lots of zeros between the decimal and the first number this time". I think the technician's brain was still on holiday......
Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.
Rx: 03/2012-Gleevec400. Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).
Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.
Advanced Member
Posted 28 September 2012 - 07:41 PM
I do have another appointment (& labs) scheduled for the 1st week of December, but I was wondering if I should ask the onc to redo the test now. I've only been on Gleevec 6 months, so I'm kind of looking for significant improvements right now. Am I being too anxious?
Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.
Rx: 03/2012-Gleevec400. Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).
Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.
Member
Posted 28 September 2012 - 07:42 PM
Antiogical, If in fact they did or did not run the test, are they going to charge the insurance company. I don't think FISH is so expensive, but I think the PCR runs over $3,000.00.
PamSouth
PamSouth
Member
Posted 28 September 2012 - 07:45 PM
Hopefully they will only charge the insurance for the labs they can find. Might want to check with insurance company first, because if they have already billed the insurance for the labs they can not find, well I don't know if they would pay for the second one. So make sure you get the billing straighten out, before you go for another lab, you don't want to be harassed over paying for labs.
PamSouth
PamSouth
Advanced Member
Posted 28 September 2012 - 07:55 PM
What a good idea. I'll investigate on Monday. Thanks!!!
Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.
Rx: 03/2012-Gleevec400. Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).
Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.
Advanced Member
Posted 28 September 2012 - 08:42 PM
Yes, you have to check everything. They may have not billed your insurance yet but I would tell the insurance that they cannot find your first test, and your going for a second one. Just tell them to mark it as not to pay for the first one.
I always get a name of who I speak to also. It has come in handy a lot when mistakes are made by the different companies.
Member
Posted 29 September 2012 - 05:00 PM
Billie, thanks ! I will remember your word !
Antilogical, I hope that your dilemma gets resolved. Waiting for a test result that is not going to come back is disappointing. I hope you don't get billed on top of it all...Janne
Dx'd: 8/2008. Started Gleevec 400 mg 11/08.
Drug break 2011.
Started Tasigna 4/11 450 mg.
Reduction to 300 mg Tasigna 1/2012.
PCRU 9/2012.
12/2012 Detectable.
PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)
12/2015 ? slightly detectable at probably less than 0.01% per Mayo Clinic.
4/2016 PCRU. Still at 150 mg Tasigna.
CESSATION: stopped treatment 7/20/2017.
9/6/2017: barely detectable at 0.01%.
12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.)
12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.)
Advanced Member
Posted 29 September 2012 - 10:46 PM
Well, I go to the same gyne that Oprah goes to...(talk about 1st class). This summer, as I was in the waiting room, I spied a disheveled LabCorp courier going out. She was chattering away on her cell--didn't sound like business, but I couldn't hear the whole conversation. Anyway, her courier bag was slung cockeyed on her shoulder hanging wide open as she made her way past me. It was a little unnerving. And I was glad my sample where not in there. Outside was a 90+ degree day. Hope nothing fell out. Makes me wonder about who delivers my samples for PCR....
Sorry this happened. Totally doesn't make you stupid. They shouldn't do PCRs near a holiday or, like my case, diagnose someone on a holiday. I never got a reliable PCR until 6 months after dx. Anyway, we should be able to rely on the best at the cancer centers that charge us an arm and a leg for treatment, (or at least adequate service, meaning our samples arrive and are analyzed within a timely manner). I wish you the best result for the next PCR! You deserve it.
Take care,
Tedsey
New Member
Posted 30 September 2012 - 08:47 PM
Janne,
Ask to see the order, make sure it has PCR on it. Then, and this IS the hard part, memorize or print off a copy online of the test tube top colors needed for a PCR test.
When I go to my hematologist, they have a list of the doctors names and exactly what tubes to draw for a visit. My hematologist only does leukemia (maybe lymphoma) and he clearly has his own "set" of tests he wants run on every patient at each visit. So every time I go, I get somewhere around 9 tubes drawn. I go 3 wks early for my PCR draw, so they'd probably only need 1-2 tubes for that, but they still draw the standard set each time. Oh, well, as long as they get the test done right, I guess I don't care about the extra tubes.
Traci
P.S. I'd refuse to pay for that test. If the order was written correctly and said PCR, you should be in the clear. Hopefully, they have the record electronically.
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