Thank you for sharing,Peg! Great information! Sent from my iPad
On Jun 1, 2011, at 6:17 AM, [email protected] wrote: > Today's Topic Summary > Group: http://groups.google.com/group/cmlhope/topics > > Prayers For Zavie Miller [4 Updates] > PCR BCR-ABL Results [2 Updates] > Zavie [1 Update] > Topic: Prayers For Zavie Miller > Barry <[email protected]> May 31 01:50PM -0700 ^ > > My thoughts and best wishes to Zavie and his family. Barry Cooper > > > > Martin Gartenberg <[email protected]> May 31 11:16PM -0400 ^ > > Hi Rob and the rest of the group, > > I have known Zavie for many years and speak, Skype or email to either him or > his wife Ida several times a week. I am actually number one on his zero > list. I did speak with Ida this morning and she told me that Zavie is > talking and understanding everything but has some weakness on his left side > which is understandable for what he went through. *He is not paralized* and > is still in a lot of pain from his legs but that will be dealt with later > on. The main thing is that Zavie is a very strong fighter and he is still > here with us. > > Yes Rob, it is always one breath at a time, and celabrating small victories. > We all have. > > When I hear anything new I will post them. > > Marty Gartenberg > > > > Rob <[email protected]> May 31 11:04PM -0500 ^ > > Marty, > > That sounds encouraging. I hope Zavie will continue to make progress. > > Rob > > > > [email protected] Jun 01 12:08AM -0400 ^ > > Thanks so much for the update Rob. Very helpful and hopeful. We are all > pulling for him. Beth > > > Topic: PCR BCR-ABL Results > peg <[email protected]> May 31 11:54AM -0700 ^ > > Friends, > > I do not post very often here any more, ever since I discovered that > when my name, e-mail address, etc is google searched, all my posts > here, that I thought were private, are revealed to the world, possibly > outing me to those I would not choose to give personal info to, such > as business associates. I do still monitor the site though and will > often respond privately to old friends. > > However, a recent posting regarding PCR BCR-ABL testing caught my > attention and seemed important enough to address to all. > > PCR's are affected by many variables, including but not limited to > labs holding blood samples too long before processing. RNA, which is > what the PCR looks at in the blood, has a lability problem, and > degrades within hours of the draw. It can genderally cause an > erroneous low reading at anything past 36-48 hours. Everyone agrees > that the best results will be on blood used within 24-36 hours of the > time it is drawn. However, many labs will hold the blood far longer > that 36 hours, sometimes up to 72 before processing. While this is > alright with some testing, it is not with PCR's! Once the RNA > degrades you will get a false low reading, even a false zero/PCRU. > > I am sharing this because it is important to understand that if you > get a PCR that is low (or zero) and the next one is elevated > again...this may mean absolutely nothing, if the low PCR was an > erroneous low! > > Here is what is important to remember: > 1) You should pick one lab and stick with it, since interpretation and > protocol will vary from one lab to the next. > 2) You should never get your blood drawn on a day, such as a Friday, > when it will not be able to be tested the next day (unless your lab > runs PCR's on Sat.). > 3) You should verify that your lab does not save cost by holding > samples until they have many from many patients. It is better to know > what day the lab actually does PCR's and have your blood drawn the day > before. > 4) You should always inquire what date and time the PCR was actually > run, and not just the draw date and reporting date. If it is greater > that 36 hours after the draw it is probably inaccurate, the greater > the time, the greater the inaccuracy. > 5) MOST IMPORTANT - Do not consider any one PCR valid...but rather > look at the results of two consecutive ones, if you have two that are > both trending downward, this is good, if you have two that are > trending upward, maybe bad. > > An extreme low in the middle of a downward trend, then one that is > higher (but still the same or lower than two PCR's ago) does not > necessarily mean that you have lost therapy control, it could simply > mean that the extreme low was erroneous. Unless you are in blast > crisis nothing is going to change quickly, so don't panic. This is the > time to take a deep breath and wait for the next PCR, which may show > that you are still trending in a good direction, if you take the one > erroneous low out of the equation. > > This type of error happens more often that doctors and patients > realize, and often pushes people into hasty and needless changes in > therapy. I know, it happened to me! Because of that I did a lot of > research, consulted with smart people, and picked a new lab that runs > it within 24 hours. Hope this helps ease some minds and arm everyone > with some good info. Remember, if CML is the bus, you are still the > driver and you should expect your docs to help navagate, not drive! > Knowledge is the key! > > Keep the faith, peg > > > Emile Fichault <[email protected]> May 31 09:03PM -0400 ^ > > Very interesting , good information . > The first time pcr explain like that . > Thank you very much . > Emile > no 527 Zavie's Club > > -----Message d'origine----- > From: peg > Sent: Tuesday, May 31, 2011 2:54 PM > To: CMLHope > Subject: [CMLHope] PCR BCR-ABL Results > > Friends, > > I do not post very often here any more, ever since I discovered that > when my name, e-mail address, etc is google searched, all my posts > here, that I thought were private, are revealed to the world, possibly > outing me to those I would not choose to give personal info to, such > as business associates. I do still monitor the site though and will > often respond privately to old friends. > > However, a recent posting regarding PCR BCR-ABL testing caught my > attention and seemed important enough to address to all. > > PCR's are affected by many variables, including but not limited to > labs holding blood samples too long before processing. RNA, which is > what the PCR looks at in the blood, has a lability problem, and > degrades within hours of the draw. It can genderally cause an > erroneous low reading at anything past 36-48 hours. Everyone agrees > that the best results will be on blood used within 24-36 hours of the > time it is drawn. However, many labs will hold the blood far longer > that 36 hours, sometimes up to 72 before processing. While this is > alright with some testing, it is not with PCR's! Once the RNA > degrades you will get a false low reading, even a false zero/PCRU. > > I am sharing this because it is important to understand that if you > get a PCR that is low (or zero) and the next one is elevated > again...this may mean absolutely nothing, if the low PCR was an > erroneous low! > > Here is what is important to remember: > 1) You should pick one lab and stick with it, since interpretation and > protocol will vary from one lab to the next. > 2) You should never get your blood drawn on a day, such as a Friday, > when it will not be able to be tested the next day (unless your lab > runs PCR's on Sat.). > 3) You should verify that your lab does not save cost by holding > samples until they have many from many patients. It is better to know > what day the lab actually does PCR's and have your blood drawn the day > before. > 4) You should always inquire what date and time the PCR was actually > run, and not just the draw date and reporting date. If it is greater > that 36 hours after the draw it is probably inaccurate, the greater > the time, the greater the inaccuracy. > 5) MOST IMPORTANT - Do not consider any one PCR valid...but rather > look at the results of two consecutive ones, if you have two that are > both trending downward, this is good, if you have two that are > trending upward, maybe bad. > > An extreme low in the middle of a downward trend, then one that is > higher (but still the same or lower than two PCR's ago) does not > necessarily mean that you have lost therapy control, it could simply > mean that the extreme low was erroneous. Unless you are in blast > crisis nothing is going to change quickly, so don't panic. This is the > time to take a deep breath and wait for the next PCR, which may show > that you are still trending in a good direction, if you take the one > erroneous low out of the equation. > > This type of error happens more often that doctors and patients > realize, and often pushes people into hasty and needless changes in > therapy. I know, it happened to me! Because of that I did a lot of > research, consulted with smart people, and picked a new lab that runs > it within 24 hours. Hope this helps ease some minds and arm everyone > with some good info. Remember, if CML is the bus, you are still the > driver and you should expect your docs to help navagate, not drive! > Knowledge is the key! > > Keep the faith, peg > > > Topic: Zavie > Cindy Lewis <[email protected]> May 31 12:42PM -0700 ^ > > Hi, > Thoughts and prayers going up for Zavie and his family! His "Zero Club" gave > me such inspiration in my first year of CML. Striving to get that Zero Club > membership number was such a great goal and kept me going. I'm sure many > others feel the same way! I've told my doctors about it along the way and > they have all been impressed! Here's to Zavie - recover quickly, my friend! > Cindy > Zero Club Member 190 and still Zero since 2000! > > Cindy Lewis > [email protected] > > > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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