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Question on BMB Report


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#1 GerryL

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Posted 07 January 2011 - 03:01 AM

Hi -  Just wondering if anyone has had the following comments on their BMB Report -

Clinical Notes: CML Progress on Glivec

                                         13/07/10                    09/08/10                    29/11/10

Specimen:                                                           Blood

Quantitative                                                         8.22%

IS                                                                       4.27%

Specimen:                         Bone Marrow                                              Bone Marrow

Quantitative                       See Comment                                             See Comment

Qualitative                         Positive

Comment: BCR-ABL not detected in submitted sample. Note control gene copy number was borderline indicating suboptimal RNA quality / quantity. Assay sensitivity may be affected. Suggest repeat testing. Minimum sensitivity of qualitative assay is one abnormal cell in 10*5.Minimum sensitivity of quantitative assay is one abnormal cell in 10*4.

My new GP is trying to get an answer from the group where my Hematologist works out of - unfortunately he is on holiday and I don't get to see him again till end of May. Not sure if this means I have to keep having BMB, they seem to keep saying I need repeat testing. I think they are trying to get a benchmark for it?



#2 Zees

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Posted 07 January 2011 - 08:58 AM

The report says that the qualitative ("you have this") test was positive, but the quantitative ("you have this much of this") test did not yield results because the qualitative test requires less of the abnormality to test positive, than their quantitative test can detect. If this is correct, this is a good sign that your CML is managed on your current medication, and there is some indication that a near-future re-test may be needed to confirm if this is the case, and that is something to talk to your hematologist about but it - like most things with CML - is not really an urgent matter.

However, this does not by any means mean that you are free of future testing, and you still need regular blood tests and occasional marrow tests for the rest of your life, so that any progression of your disease can be promptly caught and treated.



#3 GerryL

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Posted 07 January 2011 - 05:58 PM

Hi Zees,

Thanks for your reply.

I wasn't sure how many BMBs I would require till they were happy with a result. I don't mind the occasional BMB, but didn't want to wind up like a pin cushion LOL.

The test for 13/07/10 was my initial test and my new Hematologist who conducted my second test, did comment to me that my CML had been at a very low level. I've managed to get a copy of the second BMB results and was going through them with my new GP - she has never had a CML patient before so is still trying to get her head around it all. I mentioned to her a few times that it is a slow progressing disease, but she isn't used to that idea yet. My next blood test won't be until I get into see my Hematologist in May. In the meantime I keep taking my Glivec and will try to get back into an exercise routine again. My goal is to reach PCRU and be able to reduce the 400mg Glivec down to 300mg.

I hope everything is going well for you.

Gerry



#4 Trey

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Posted 07 January 2011 - 09:57 PM

The note you refer to is about the PCR done on the marrow sample.  It means that the sample was spoiled before the test was done, so it is a failed test.  It must be re-done, but you should just use blood this time.  What did the BMB cytogenetics report say?  It should discuss "X out of 20 cells examined"....



#5 GerryL

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Posted 08 January 2011 - 02:10 AM

Hi Trey,

I've just looked through the printouts I got from the GP - doesn't appear to be a cytogenetics and molecular study (which were to follow the chromosomal analysis and surface marker studies). I'll get onto the GP on Monday, as the Hematologist clinic sent hard copies to the GP, after I rang them and requested the reports - hopefully it is in there. If not my GP might be able to ring the group that did the review of the BMB and get it sent direct to her. My GP didn't have any of the actual reports from the first BMB other than a letter from the Hematologist saying CML was confirmed and that I was a pleasant young woman, which is nice to know, but not much help.

I have been a bit slack in not getting all of this info, but it was my NY's resolution to try to collect it all. Once I get all of the second BMB report, I'll send a request to you for help with deciphering it.

Thanks for your help with it.

Gerry             



#6 GerryL

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Posted 11 January 2011 - 04:24 AM

Hi Trey,

Hopefully this is the info that shows I have CCyR (but I so want PCRU)

Tissue Submitted                         Bone Marrow

Number of Cells Analysed               7

Number of Cells Counted                13   

Banding Studies                            Glemsa 

Band Resolution                            300 bands per haploid set (Low - Moderate)

Karyotype                                     46,XX(20)

Interpretation

Female karyotype, no abnormality detected       



#7 PhilB

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Posted 11 January 2011 - 06:00 AM

Congratulations on the CCyR which is definitely what you have.

Although the last PCR sample is poor you could possibly argue that it's poor 'in a good way' ie it was much less sensitive than normal, but within the limits of that poor sensitivity it failed to find any Ph+ cells.  That doesn't stop you needing a new test, but may affect how much of a hurry you are in to get it.  You could say that your current level is 'PCRU for a crap PCR'!



#8 Trey

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Posted 11 January 2011 - 11:22 AM

Congrats -- you are doing well.



#9 GerryL

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Posted 11 January 2011 - 07:30 PM

Thanks guys, my next blood test won't be till May, so hopefully it will show a clear PCRU.

I've gone from having to self diagnose the potential of having leukemia - my GP/s used to mention to me that my white blood count was slightly elevated, but not enough to raise any alarm bells - this went on for about two years. Finally one of them said to me I was showing slightly elevated Basophils, but she didn't know what that meant, so I went home and Googled it. I went back a couple of months later and mentioned the possibility of having leukemia - so following a further blood test and around six months later I was diagnosed with CML. I kept thinking that it probably was nothing since I didn't have any physical symptoms and the GPs didn't seem too concerned - it was when I read that it was a slow progressing disease, that the possibility started to sink in for me and then I received the official diagnosis. I'm going to do my best to get a copy of my next lot of results straight away - the blood test will be easy as I see him when that happens, BMB is a bit more difficult as the Hematologist rings me up at night to give me the results.

A question - if and/or  when I get to PCRU, is around a year of PCRUs enough to start thinking along the lines of reducing my Glivec to 300mg?

Though I'm still going through different side effects (to a lesser degree than a lot of other people here) I think my body would prefer (and could eventually manage my CML) on a lower dosage. I'm back to being able to eat a few chips/french fries with salt, without pooling fluid in my feet, but I feel a few aches and pains in my muscles the last couple of days (nothing major) - I will just make sure I take my Calcium and Magnesium twice a day again.

Gerry



#10 Trey

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Posted 11 January 2011 - 09:48 PM

It is better to be surprised by PCRU than to anticipate it at each PCR and be discouraged.  Progress along the way is good enough.  Anything else is a bonus.

As for reduced dosage after PCRU, my personal view is to wait until there are two years of continuous PCRU before reducing dosage.  After initial PCRU (I call it barely PCRU) there is more work to be done to drive the remaining 1 million leukemic cells down to an even lower number.



#11 GerryL

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Posted 11 January 2011 - 11:15 PM

Thanks Trey - I'm getting a bit ahead of myself have to learn some patience, I should think about taking up meditation down the track, learn to enjoy each day a bit more as it comes. What's the Vulcan saying "Live long and prosper" or "Dif-tor heh smusma" if you happen to speak Vulcan. Note to self - you have way too much time on your hands today.



#12 Trey

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Posted 12 January 2011 - 10:30 AM

Yes, and do not be a toDSaH (if you speak Klingon).

http://en.wikibooks....f_Klingon_words






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