4 replies to this topic

[designer]

Just diagnosed with PH-CML.  Been looking everywhere for anyone who knows specialists or who is also negative.

Hope someone can help!!

[Susan61]

Hi:  I am not understanding your message very well.  Could you please give some more details.

Were you diagnosed as having the Philadelphia Chromosome CML? I do not understand what you mean by Philadelphia Negative.

Have you had CML for awhile, and are you in remission now?

I am sure somebody in the group can help you if they know more about you.

[hannibellemo]

Hmm, according to Wikipedia (and does anyone really pay attention to Wikipedia? I don't really know if it is a reliable source or not) 95% of us are Ph+ " The remainder have either a cryptic translocation that is invisible on G-banded chromosome preparations, or a variant translocation involving another chromosome or chromosomes as well as the long arm of chromosomes 9 and 22".

http:///en.wikipedia...phia_chromosome

Sorry, Designer, didn't mean to leave you out - welcome! I don't know if what you have is what is described above. I've never heard of Ph negative and it sounds like even the 'cryptic' translocation referred to in Wikipedia is in addition to the Ph+ translocation.

There are several very knowledgeable people posting on this site and I'm sure they can get you good information.

[Trey]

Philadelphia Chromosome negative (Ph-) CML can be of several types.  It is a complex and even controversial subject, and you would need to provide some more info to narrow the discussion.  Sometimes it is an atypical form of CML (aCML), sometimes it should really be called CNL (chronic neutrophilic leukemia), sometimes it is not CML but rather CMML, or possibly not leukemia at all. It might be an early form of another disease, such as Myelofibrosis.  Ph- CML can be either BCR/ABL positive or negative.  BCR/ABL is normally produced by the Ph+ chromosome, but in Ph- it can possibly be produced in another way, or else the Ph+ chromosome is a rare variety hidden from current testing methods.  As you can see, it is a complex subject.

So first of all, what do your lab results say, and how were you diagnosed?  Since this is a rare form of leukemia (if at all), you are wise to seek a specialist opinion.  Key information would be the results of a bone marrow biopsy (any chromosome abnormalities), FISH, PCR, white blood count from the CBC test, or other test results used in the diagnosis. Local Oncs in Meridian Mississippi could not handle this.  Also, you should be skeptical about the diagnosis for a while, because diagnosing this is tricky.  I am not telling you to be distrustful of Oncs, but most Oncs cannot handle such issues.  So start with the labs and diagnosis.  Get copies of all lab reports.  We can help you understand them, and help you ask the right questions.  We cannot diagnose you, but we can help you ensure a proper diagnosis, which is crucial to choosing the treatment. Our CML drugs would only work if you are BCR/ABL positive, and even then maybe not.

You might also want to read these:

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2082654

http://atlasgeneticsoncology.org/Anomalies/aCMLID2117.html

[kchristicarter]

Hi,

My husband has been diagnosed with the same thing.  We go to Johns Hopkins in Baltimore, MD.  He is both ph- and bcr-abl  negative.

He gave me his e-mail address if you want to reach him.  It's blueheron02c@yahoo.com

Kelly