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What to do if the doctors don't agree
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What to do if the doctors don't agree

My mother was diagnosed with atypical CML in April by her hometown doctor.  She then went to Mayo and the doctor there told her she did not have Leukemia based on her blood work there, but she had been overdosed on Hydrea during the summer to the point her wbc was 3 and was only recovered to 11 by the time of her appt in Sept.  Now her wbc is 58 and her hometown doctor is putting her back on Hydrea.  Her family is concerned she is going to take a serious chemo drug when there is still a question of what she has.  Could it be an infection that isn't showing up?  Should she be put on antibiotics to see if that cures any underlying infection?  Should they do more tests of any kind that you can suggest?  She is JAK2 negative and PH negative also thus the atypical diagnosis.  What is the current thoughts on that disease?  Her current doctor has little experience in this and we had hoped Mayo could help.  We were thrilled to learn it wasn't Leukemia, but now confused because they didn't do more at Mayo to find out what it is.  Any advice you can give would be helpful.  Thank you so much.  I have never attempted anything like this on the internet and I just hope for some help out there.
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Avatar_dr_m_tn
Hi.  It's hard to comment on your mother's case without reading the full report of all the blood tests done.  I would like to know from what evidence her hometown doctor based his diagnosis of "atypical CML"? What blood work was done at the Mayo clinic?  A definite diagnosis of chronic myelogenous leukemia (CML) is made by demonstrating the existence of the Philadelphia chromosome on cytogenetic studies of the bone marrow cells (harvested by bone marrow biopsy) or by detecting the bcr-abl gene (this is the defective gene responsible for the CML) by means of a test called polymerase chain reaction or PCR.  If these two tests were not done, I can't see how a diagnosis of CML can be made.  
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Avatar_f_tn
The bcr-abl test was negative, as was the JAK2.  That is why they labeled her atypical.  There is no genetic basis for the CML therefore she was not put on Gleevec.  She is on Hydrea to keep the wbc count down to a more normal level.  I think the only thing that led to the CML diagnosis was the extremely high wbc with no sign of infection or other cancer.  Mayo did the same blood tests as the hometown doctor, as well as the lab in Iowa City.  I would like them to run other tests but havent a clue what to ask for.  She had an abcess (abscess) in her gums/jaw bone that went undiagnosed for more than a year but that was 4 years ago and I wondered if that led to infection around the heart which I read could happen, but I assume they would have checked for that.  If you had a case like this that you ruled out everything but CML and called her a one in a million case that is atypical, what would you have checked for before giving it the atypical ruling?  I could then ask if those things were checked for.  Thank you so much for your response.  I really don't know anywhere else to go with these questions.
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