CMML

[tchardy]

I was having problems with having mrsa and wasn't healing properly before the next out break was upon me.

and was being sent for regular blood tests to keep an eye on things, went for the 2nd lot of blood tests when my doctor recommended that i go for a bone marrow bi_op to check what was going on infection wise when the cmml reared its ugly head.

my platelet count is 107 and white cells are 0.5

i had my gene marking testing done straight after the bone marrow bi_op and have been told that i am a good candidate for a transplant, will get word back from the bone marrow board in two to three weeks time.
and yes i am trying to stay positive and that has its peaks and lows.

I am 41 yrs old male.

In Summary:
They say the only treatment to survive it is a stemcell (bone marrow) graft(transplant).

[All4DK]

Tchardy,

I've heard stories of people thriving if they have a medicine that works with their disease/body. My mom is currently on Dacogen and she is better than before the disease. I feel a BMT is a very big step, and from my experience (limited) that you should get yourself HLA tested (typed) from the Red Cross and have the NMDP do a search so that you get the benefit of time and that a great match could be maid. Also, if you have had HLA done, you could find your own matches at http://www.marrow.org/PATIENT/Donor_...ype/index.html.

When were you diagnosed? Have you been on any medications? These questions are all important as well as your age and if you've had prior chemotherapy. My mom received chemo 13 years ago for Breast Cancer and this surely was the cause for her CMML.

Please reply or shoot me an email at all4dk@yahoo.com.

You'll be in our prayers.

Joe

[tchardy]

hi All4DK

Was diagnosed around one month ago.
I am 41 yrs old
have been on no medications so far, i have been for one HLA blood test and will have another one in a week of so, and in the meantime they are looking a the world registry for a unrealated doner.
they say i have chromosome 7 deletion wich makes the doctors no that it cmml.
My blood count is:
Hb 126m
MCV 101
wbc 4.1
neutrophills 0.45
monocytes 1.4
platelets 107

My IPSS score is 1.5 which places me in the "intermediade-2 risk category

thats all i no at the moment.
hope to get transplant in the next few months as i dont wish this to turn to AML.

I am a web designer so are thinking about building a site to get people with cmml to register to judge how many people in the world have cmml.

[All4DK]

Would be an amazing idea.

You're very young to have this. I believe my mom's doctor told me that at any given time, under 1000 in the world have it. It also primarily affects people over 65 (which accounts for a lower than avg life exp some due to natural causes). We need to stick together and accumulate information in order to help ourselves and the ones we love. I will respond to your email as well, but please let me know if i could help with your site (obtaining info, etc.).

Thanks,

Joe