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question about diagnosis


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#1 kellbell

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Posted 01 April 2012 - 08:55 PM

I was wondering after reading oone of the discussions if you can have the philidelphia chromosome and not cml?  When my Dr. diagnosed me he said I didn't have any leukemia cells . I think thats what he said, but I was positive for the chromosome so he said thats how they found cml.  I don't really understand much about all the tests and what they mean so I hopefully will start learning. I will have to ask my Dr. more when I see him next. I was just trying to take one thing at a time.

                                                                     

      Thanks Kelly



#2 PhilB

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Posted 02 April 2012 - 07:18 AM

Hi Kelly,

I'd suggest you ask your doctor for more details of the tests next time you see him.  It's theoretically possible to pick someone up very early so before any of the 20 cells they looked at on a bone marrow biopsy were positive, but with high enough levels to show clearly on a more sensitive PCR test, but it wouldn't normally happen as if the levels were so low there would be no reason to do the sensitive test..  In your case you had an elevated WBC and pretty much by definition if CML was causing the elevated counts then a high proportion of the cells from a biopsy would be leukaemic.

It's possible that the sample used for the cytology (looking at the cells) was spolied and so they couldn't find appropriate cells to look at, but otherwise it's hard to envisage how they would find the Ph+ chromosome and not find leukaemic cells.  Is it possible that he said they found the Ph+ but they didn't find any blast cells?  That would make much more sense (and be good news) and would be consistent with your relatively low WBC which suggests the disease was caught early.

The question of can you have the ph chromosome and not CML is a very controversial one and has been the subject of lively debate on here before.  Some say Ph+ chromosome = CML and if they've detected it then unless you treat it it's only a matter of time before the disease develops.  Others say that you can have the mutation and not the disease either because your body has a natural mechanism to control it or because the mutation has occurred in a cell line too far down the chain to be able to take over the world.

Best regards

Phil



#3 kellbell

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Posted 02 April 2012 - 10:55 AM

Hi, thanks for the response.  My Dr. did say he caught it very early.  I just wonder how long I had it and what if I didn't start the sprycel if it would get worse or if it would eventually get better on it's own.  I did feel pretty bad before thats why I kept going to the Dr. and asking what was wrong with me.  I do feel alot better since my cbc is in normal range.  I was just curious, I'm glad I feel better.

Thanks again , Kelly



#4 Susan61

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Posted 02 April 2012 - 01:56 PM

Hi Kelly:  Phil is right, you better ask your doctor to explain this to you in simple terms so you know what is going on.

The only thing I can tell you is that CML does not get better on its own.  Your Sprycel is what got your numbers back into normal range, but the disease is still there.  The good news is they caught it early, and it sounds like your having a good response.  I would call the doctor, and tell him you confused and need a better explanation of what is going on if you do not want to wait till your next appointment.  Good to ask questions so you know what its all about.



#5 PhilB

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Posted 02 April 2012 - 02:10 PM

Hi Kelly,

It's great that you feel better.  We all tend to have a bit of a 'you have to be your own advocate' attitude on here and tell everyone they have to get their onc to explain things properly to them.  It is always an option to just trust your onc (if you do), take your pill and not think about the disease and that may even be the best route to happiness.   Another option is to be really modern and cutting edge and outsource worrying about your disease to a bunch of other people and let them do the work.  That's where this site comes in.  Post your questions and people will answer them.  Post your results and people will tell you how drunk you should get and how silly your happy dance should be.  We're not doctors, but you have a disease where the vast majority do well and there are a lot of people on here who know enough to tell you if you need to worry!






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