Dear Anil, I know that our Singapore lab also cannot detect the p230 protein. Our doctor mentioned that Dr. Tim Hughes' lab in Adelaide, Australia, may be able to do detect unusual breakpoints but he was not sure. Since Aditya is still not in CCR, it is okay to follow him with a BMB or FISH. Peripheral blood FISH is not very favored by the doctors since it gives lower values than marrow FISH. But many doctors do follow the Ph percentage by FISH. Bear in mind that a BMB gives the more accurate picture of the disease in the active phase because for a BMB, metaphase cells are cultured. These are dividing cells. For FISH, interphase cells are looked at usually. I think the monitoring guidelines are to do a BMB at diagnosis and every 6 months until 0%Ph +. In between, you can do peripheral blood FISH. Once he tests 0%Ph+ by BMA, you can do a BMA yearly as recommended by the CML experts. I do understand the trauma of a BMB for Aditya, if he is in too much pain and if your doctor is agreeable, you can follow Ph percentage by peripheral blood FISH.
Dr. Sarjana Dutt from Dabur is good at explaining things and receptive to patient queries. You may want to ask her opinion on the PCR result and breakpoints and enquire whether there are any PCR labs in India which can detect residual disease for unusual breakpoints. If you mail me, privately, I can give you her email. Best Regards, Anjana On Mar 28, 4:42 pm, "anil nagpal" <[EMAIL PROTECTED]> wrote: > Dear Anjana, > Thanks for your reply and view point . Pls note that when I got RT-PCR test > done by Dabur they never mentioned this NOTE of p190 and p210 . After > getting the result of the test I showed them the BMB test report at that > time done by AIIMS and it was 50% ph +ve at that time. They decided to do > the RT -PCR again and the result was same . Then in the second report they > mentioned this note of P190 and p210. > > As you mentioned that in case of Aditya it may be p230 BCR-ABL protein and > RT-PCR test at dabur could not detect the same. > Is there any lab in India or abroad like QUEST DIAGNOSTICS in US which can > test and confirm on p230 BCR-ABL protein. > Do you suggest that FISH test will be the right way to track in case of > Aditya. > > BMB is very painful and Aditya being a child !!!!!! you can understand. > > If you can let me know why BMB is very important and why can't doctors track > with FISH test in this case as FISH test is done using blood sample and > aditya can manage easily. > > Your view points based on your knowledge is very useful for us as it is > difficult ask such things from doctors. > > regards > > Anil Nagpal > > On 3/27/08, anjana <[EMAIL PROTECTED]> wrote: > > > > > > > > > Dear Anil, > > > Dabur labs is a good lab and trustworthy. If you look at the note > > at the bottom of the RT-PCR report, you will see that they can only > > quantify transcripts corresponding to the p190 and p210 proteins. > > Although rare, some CML patients have unusual BCR-ABL breakpoints and > > if they do, most PCR labs are not able to give a measurement of the > > disease by PCR. For example, a few patients will have a p230 BCR-ABL > > protein and if they do, the Dabur PCR will not be able to measure the > > disease load. The PCR labs use primers for the major and minor > > breakpoints only and if Aditya has a rare breakpoint, his PCR at this > > lab will always be zero. > > > I have met 2 other patients who had rare BCR-ABL breakpoints and > > their doctors followed their disease by FISH and bone marrow > > cytogenetics testing. Since both cytogenetics (30%Ph+) and FISH (12%Ph > > +) show Aditya is still not in complete cytogenetic remission (CCR), > > most doctors would increase the dose to see if the Ph percentage goes > > down. > > > So, I think in Aditya's case, monitoring by FISH and BMA > > cytogenetics will give a measure of his disease load. I wish Aditya > > good luck on the increased dose. Please do not hesitate to email me > > if I can help further. > > > Warm Regards, > > Anjana > > wife of Roy > > d/x Jan 2002 > > 400mg Glivec > > PCR 3.9log > > > On Mar 26, 8:58 pm, "anil nagpal" <[EMAIL PROTECTED]> wrote: > > > Dear Anjana, > > > > I am Anil Nagpal F/o Aditya M/ 10 yrs d/x March 2005 , on Gleevec 300 > > for > > > one yr and then on 400mg from April 06 onwards. > > > BMB test as on 15 Feb 07 shows 20% PH+ve but RT -PCR test at the same > > time > > > shows 0% . RT -PCR and FISH report of June 06 is enclosed the result > > was > > > same in Feb 07 also 0%. > > > > BMB was done again on 10th March 08 and shows 30% Ph+ve. > > > > Doctor has advised to increase the dose to 500 mg > > > > I am sure that if I will get the RT PCR test done now it will again show > > 0%. > > > > Pls give your views on this and on which test I should trust more. > > > > regards > > > > Anil Nagpal > > > - > > -- > Regards > > Anil Nagpal- Hide quoted text - > > - Show quoted text - --~--~---------~--~----~------------~-------~--~----~ [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 -~----------~----~----~----~------~----~------~--~---
