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Does Anyone Else Have Cmml?

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Subject: Does anyone else have CMML?
Date: 03/05/2008
Recently diagnosed with CMML. I live in Australia, and have been told there is no treatment, and just to "watch and wait" Has anyone else been in this situation? I am also told it is aggressive, and terminal!... but that I may have 4-6 years symptom free... doesn't really sound agressive, does it?
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Subject: RE: Does anyone else have CMML?
Date: 07/05/2008

 

On 3/5/2008 wendyv wrote:

Recently diagnosed with CMML. I live in Australia, and have been told there is no treatment, and just to "watch and wait" Has anyone else been in this situation? I am also told it is aggressive, and terminal!... but that I may have 4-6 years symptom free... doesn't really sound agressive, does it?

Hi,

How are you doing these days .. 4 months after your original post?  I have just been told (have refused biopsy thus far, but will get one soon, once I'm more educated) that my blood over the last 5 years are showing the Pattern of CMML.  Definitely NOT a pretty thing from what I've been able to learn the last couple of days.  I'm Only 38!

CMML is classified among MyeloDysplastic AND MyeloProliferative Diseases because it shares features of BOTH.  As far as "treatment" from your doctors, UNTIL they see (my understanding) WHICH WAY your disease will progreess, there is really nothing They can do except watch and wait.  This is not a very understood disease and there are no specific treatment protocols.

IF your blood shows that you have PDGF-R Fusion Genes (it's a long arm of chromosome 5(5q33) ) then Roferon-A .. GLEEVEC.... Imatinib...WILL HELP.  MD Anderson.org has seen rapid hemotologic improvement and sometimes molecular remissions in CMML patients.

IF you do NOT Have Fusion genes, in 2002 Hydroxyurea (Droxia, Hydrea) was the medicine of choice for CMML, but with modest success. 

Personally, am doing MEGA Supplementation and research on my own.  Layman's terms are best understood on LEF.org on their various Cancer Treatments and Protocols (from all over World).  There are also various Scientific Studies you can find on the net.  Just takes Lots of Time, Energy, Patience ... and FAITH, and Dedication!

DEFINITELY suggest Turmeric(Curcumin) 2400mg up to 3x day... GREEN TEA 2-3 750mg caps/day .. and up to 10mg Melatonin to start as you do your own research.  Then again, I am NOT a doctor.  I just know that I WANT TO LIVE and the Prognosis that I've read on various pharmaceutical studies is not that promising. 

YOU must become Very Involved and Educated in your care. 

I hope that you are doing well.  This is Certainly a LONELY route to be on.

 God Bless You and Big Hugs Your Way,

M.

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