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Friday blood draws....is that really a bad day???


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#1 reedgirl

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Posted 04 November 2011 - 05:57 PM

I know this has been discussed before, but I'm gonna bring it up again   How and why does it affect the validity of the results?  I asked today at Greg's appointment if they run the screen today or wait until Monday.  I didn't get a clear cut answer, it was more like "I think on Monday" well, "they may start the screen today it has to run a course so I'm not sure".  This was not Dr Talpaz, it was an assistant, maybe I should have asked Talpaz. Anyway, it was another good visit.  Greg is not PCRU yet, but I expect today's lab work will come back that way.  Then again, if its not good to have it done on a Friday, who knows what his levels actually are

So, all you CML brainiacks, whats the result of having Friday draws?  Do you have accurate results?

Thanks in advance for any input

Audrey



#2 hannibellemo

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Posted 04 November 2011 - 07:05 PM

Hi, Audrey,

It's my understanding that Mon. - Wed. are optimal days for our PCR blood work if it is sent away. I generally get mine back the same day when I have it done at Mayo and generally a couple of days later if I have it done here and couriered up. So, I always make sure my "big" bloodwork days fall early in the week to be on the safe side.

Dr. Talpaz is Michigan? (I forget). If so, I would assume they do their own bloodwork, but I  don't know that for sure. If they wait until Monday I wouldn't be so happy about it, just try and make your appointments early in the week in the future.

Good luck, though! I have my fingers crossed for you!

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#3 Trey

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Posted 04 November 2011 - 09:34 PM

I am certainly the most vocal "anti-Friday labs" person.  It is a very practical issue.  If the blood is taken after noon on Friday so that the lab can't finish before Happy Hour, and the lab people don't work on the weekend, then how long will the sample sit around?  Phil would ask what the number base is, and whether we are dealing with linear or logarithmic circumambulations, but that is a distraction unworthy of our attention.  Don't interrupt me, Phil.  The answer is still 60+ hours minimum.  I don't like it as a general rule.  But sometimes you don't get to set the rules.

Saying that the PCR might be started on Friday and let run all weekend is not accurate.  The PCR does not run for 60 hours.  It must be monitored and attended to.

However, if you always do it the same way, then the trend line would likely be the same slope.  If the sample is viable enough to grow the DNA/RNA, then a useful result can still be obtained.  If not, the lab will say it failed.  I would just be less likely to trust the absolute results.  Just try to have the next PCR draw done mid-week as confirmation of this result.



#4 acb

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Posted 04 November 2011 - 09:50 PM

Trey,

This is a little off topic but somewhat related ... I went for my first and only BMB a while back on a Thursday. (I was dx July 2010 but didn't have a BMB at diagnosis ... PB has consistently shown PCRU since Oct 2010). My new onc wanted a BMB just to "dot all the i's and cross all the t's" since I had never had a BMB. Anyway, I called after a week to get the results. Got to talk to the oncologist herself and she said there were no chromosomal abnormalities and nothing at all to be concerned about. I asked if they did a PCR. She said "they" forgot to order it but she caught it and ordered it on Monday (so 4 days after the BMB). I called the next week to get the PCR results and they said totally undetected (PCRU). I haven't received the hard copy yet. So, is the PCR result even reliable? Just wondering.

I seem to have bad luck with getting the correct care, tests, etc. It is a good thing my case has been pretty uneventful and typical!

Thanks!



#5 acb

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Posted 04 November 2011 - 09:58 PM

I should add that she did the BMB draw twice!!! With no drugs or sedation or anything (well, she did numb at the spot). When she did the first one, the lab guy assisting her said she did not get enough spiccules (sp?), whatever the heck those are. So she did it a 2nd time. He told her again she didn't have enough, and I said "You are not doing it again!" She said, yeah, we will go with this since it is really just a formality at this point. Then, when I called to get my results, she told me that the lab guy was wrong and she had plenty the first time -- yeah, so glad you told me that after I went through it twice!!!

I am just Bad Luck Schleprock!



#6 GerryL

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Posted 04 November 2011 - 10:47 PM

I'm just wondering why she said it is really just a formality at this point.



#7 Guest_billronm_*

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Posted 04 November 2011 - 11:46 PM

Hi Audrey,

   Boy it's great to hear from you now and then. I can't even imagine how busy you and Greg are. When it comes to this site I have a mental block about learning about pcr logs etc. The only thing I really know is I was 90,000 at dx. That was 4 years ago I get bw once a month and see onc or his assistant every 3 months. I get a bcr-abl test every 3 months along with my regular bw. I was told you can't get the bcr-abl test on a Friday, or the day before a holiday because that sample is only good for 6 hours. So they have to get it to the main lab in a certain amount of time. Last year my Onc got a new assisstant and when she looked at my chart she said my bcr-abl was zero and it doesn't get any better than that. I was satisfied with that. I don't ask questions because I'm afraid of the answer. At dx

4 years ago I went home and started putting my affairs in order, I started writing my obit,Picked out this red suit I have I just love that suit but it's a bit snug so I left instructions for the funeral director if it was to tight cut it up the back I doubt that anyone else would wear it after me. I made a note to myself to pick up a pretty white blouse and no shoes. So I'm the type of person that too much knowledge is not to good for me. I am lucky to have an excellent onc/hemotologist so I just put my trust in him. So how is Greg feeling? And how are you and that beautiful daughter of yours doing? Okay I hope.She is a beautiful girl you might consider locking her up until she has some wrinkles and grey hair.

I feel pretty good except I'm so tired all the time. But I have those 2 other health problems (not cml) related and the meds I take yup cause drowsiness. And I just developed high blood Pressure (wonder what took me so long) so I'm on 2 different bp meds. Yup they cause drowsiness. The bp is still not under control, we were planning on going to Fla. for the winter. And we wanted to spend all the holidays with Ron's family.My doc's won't release me yet but next week I  get a nucular stress test so hopefully doc will release me. And I'm off to Fla.When Ron retired 6 years ago we're at the mercy of medicare,planb and the Pa fish and boat commission which Ron retired from,and the rail retirement board which my deceased husband worked but was not retired .What a mess. So if we don't get all these tests they may not pay for, even my cml bw.

   I'm sure I'll have access to a computer in Fla. You have my e-maill address so if you send me yours I'll be able to write to you. I also have a sister-in-law in Boynton Beach on the atlantic side we try to visit her to. Maybe we could arrainge9(forget my spelling I just can't do it anymore) I had to buy a dictionary but that doesn't help much ask Greg he'll understand Brain Fog! I'll keep in touch and maybe we could meet at Disney World. Ron has never been there. Greg and I will have to rent scooters, I've been there before. Anyway it's a thought!. You all need it.  lol Billie



#8 LivingWellWithCML

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Posted 05 November 2011 - 05:49 AM

I spoke to a friend on my street who just happens to be a professor of microbiology ... He keeps a PCR machine next to his desk the way we keep things like a printer or fax machine next to ours, LOL

Although he doesn't do BCR-ABL testing, he did say that the DNA/RNA in a blood sample can have some material degradation within 4 to 6 hours that will impact PCR, given the sensitivity of the test.  He also said that it doesn't take very long to run PCR -- it's all of the medical red tape that takes the 1 to 2 weeks to report results for most of us.  At Emory, anyway, he is reasonably confident that they would not let a blood sample just sit through the weekend and that techs would work on this stuff on weekends, because they understand the importance of running PCR as closely to the draw as possible.  Regardless, I get all of mine done on a Wednesday, and I always bug the nurse with my knowledge, so I remind her that they need to run the sample across the street ASAP to get the test started immediately.   Who knows what they are actually doing though.

hope this helps!


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#9 Guest_billronm_*

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Posted 05 November 2011 - 10:17 PM

Hi Dan,

   Thanks for the info. I get most of my bw done at a lab close to my house. But every once in a while I'll go to the cc and have it drawn there. Just to make sure everyone is on the same page.

Sometimes I wonder about those people at the cc. Last week I received a letter from the cc telling me when my next appt. was which they always do but there was another paper for a bw script. I get bw next week and I have a standing order so I wondered why they sent me that script. So I read it and it was orders for magnesium test and salvitory glands and something else I didn't even understand.

So right away I started getting nervous,I was thinking maybe they suspected something else as well as cml and aren't telling me until they got the results from this test.I do get mouth sores and I have a hole inside my right cheek but I've had that a couple years. My legs got kind of rubbery then I looked at the top of the paper and it was a script for a 79 year old man.Each patients privacy is supposed to be protected especially there.

   This is the good part I called them to tell them about the script and I never had a chance to tell her why I was calling she just tried to switch me over to scheduling I yelled no and she heard me so I told her what happened and gave her the name of the man on the script he was probably waiting for it. I said I wouldn't have even read it if I had realized it wasn't for me. Because I am expecting a script for my bcr-abl test next week. I couldn't believe what she said next she told me they never send scripts in the mail they only fax them to the lab! By then I was furious I said if you don't send scripts through the mail what am I doing holding a 79 year old man's script. I offered to send it back she said to just throw it away. IDIOT.  Everybody makes mistakes but she just kept getting herself in deeper and deeper.

All she had to say was it was  a mistake and she'll send him a new script. That's as bad as cashiers who can't make change unless the register tells them how much.

   Just think they are all the new leaders of our country.  Thanks for letting me vent Billie



#10 reedgirl

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Posted 06 November 2011 - 08:02 AM

  Thanks for the info everyone.  Greg's appointments have always been on Fridays because we travel 5 hrs to Michigan, and because that's just what they always scheduled us.  Something about the days he sees patients.  So, I guess we have that in our favor, the consistancy that he's always had Friday draws.  Next appointment is in 3 months, that one I scheduled for a Thursday afternoon.  We're hoping there will be enough snow in the northern part of Michigan that we can take our snowmobiles and make the trip a little vacation.  Maybe having a Thursday afternoon as opposed to a Friday morning will be a good test of their processing and whether or not they run his labs. He gets a basic blood draw every 6 weeks so I'm not concerned so much about the whites, reds, etc, I'm more concerned about the PCR.

  Dan, you make an interesting point....why does it take 2 weeks to get these results? I don't understand what the red tape would be that would cause such a delay, I just thought it took longer to process.  That stinks!

Thanks again everyone for the input!

Audrey



#11 reedgirl

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Posted 06 November 2011 - 08:07 AM

Wow Billie...that is so wrong on so many levels!  I would complain to a manager!  I can't believe she blew you off and fed you so many lies, nice patient support they have!  Hang in there and fight back, I know you will, lol!

Stay strong my friend,

Audrey

Ps...I'll email you so you have my email too.  I'm very jealous of you getting to go to Florida!  I hope and pray you get the all clear to get out of this cold weather!!! We may get a chance to fly down since we have credit from the unused tickets we had in Feb.  We had three one way tickets from Tampa to fly home after we were to spend a week or so in Fl, then Greg's dad was going to fly down and spend a few weeks, drive the conversion van home.  It was a great arrangment, but sometimes life has other plans different from ours.  We may fly to Tampa or somwhere close to Marco Island, we have friends that winter there.  How close is that to where you would be?

Ok, I'll email you now so you have mine and we can correspond.  Thanks

Oh, one more thing, I'm on facebook too, look me up and add me...Audrey Claypoole Reed






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