CMML

Laura,

In answer to your question from last June, 2009, for CMML patients whose white blood cell count skyrockets out of control, the clotting ability of the blood also is lost. It's therefore easy to bleed. Gums can become inflamed and bleed.  Bruising is common. The simplest cut can get infected because the blood is not able to carry the right kind of cells to fight off bacteria and viruses. 

Keep searching the internet for sights, such as the Leukemia-Lymphoma one, to find out more. 

Rhonda, my husband was dx with CMML in December 2010.  We live in SC and he is active duty military.  I am hoping that we can go to Duke for treatment.  He has not started chemo or any other treatment.  He has been very tired and is problems with his eyes(redness and pain).   I know the road ahead is going to be tough, but I am praying that God will bless our family.  All the information from the doctors and what I read indicated survival is 12 to 24 months.  My husband is 49 yrs old.  Any advice??

Rhonda, Sorry to hear that your husband was dx with CMML. It sounds like he is the watch and phase of the disease. Try to get him to a hematologist /Onocologist if possible. He's young and is a canidate for bone marrow transplant. The 12 to 24 months surival rate is after chemo is started. I have CMML and I am in the watch and wait phase. I take folic acid and have monthly blood work for now. It was nerve racking to say the least at first but I've come to terms with this phase. I was dx Sept./2011. Not everyone starts with Chemo. It depends where the disease is when it is dx.  The watch and wait phase can last up to 5 years before treatment needs to be started. Also Keep searching the Internet for new info. God Bless you and your family. Sharon

Drufrederick, Sorry I typed Rhonda by mistake. Sharon

hi there, i had a cord blood transplant in jan,2010,

check out my web site.

http://timaru.gen.nz/cmml/

regards

Troy

Hi Sharon, I just read your post and am sorry you have been diagnosed with CMML. I wish you all the best. I am writing to find out any info for my mother who first had ALL and now they think she has CMML...which is contradicting. They killed the folic acid in my mother for ALL since its bad for it and got her into remission with no more ALL leukemia in her blood. I read and you confirmed that CMML patients need folic acid and B12 to keep it at bay. Her doctors are telling her that the ALL could have come out of having CMML which is chronic leukemia (ALL is acute)...we'll never know as she did not have blood work prior to ending up with the ALL where all her symptoms come on suddenly.  They did not warn us that by giving her chemo which purposely killed the folic acid, she could get CMML (makes sense if folic acid is a remedy for CMML). what upsets me is that her doctor who is supposedly the best in the area, did not give us these details. I had to look up everything online and learn about it myself.  We are now waiting to see what type of CMML is in her genes and also waiting for the results of her spinal tap to see if there are anymore ALL leukemia cells the fluid. 
They think she has CMML because her monocytes are 31,000 when all her hemoglobin and Platelets seem fine. thank you for your time. Maria & Maria

Dear Rhonda,

So glad to hear about your good news. My mother has ALL and now was told she has CMML...soo connfusing.  She is too old for the transplant but its nice to know that they can cure people from something so rare and tough. You are a very strong and positive person. We are very happy for you !!!

All the best,

Maria & Maria

On Apr 30, 2011 4:38 AMCologal79wrote:

I was diagnosed in january with cmml. I am only 32 so I was curious as whether anyone has done a stem cell transplant and whether it cured or how much it prolonged things? I'm moving forward to do the transplant in hopefully may. Any information would be appreciated. Thanks

Hi. I was checking up to see how you are doing? Did you get your transplant? I was diagnosed June of 2009. Had 6 mos. of Vidaza and now am on watch and wait. What are your monocyte counts and other blood work? What are the symptoms you experience? I was thininking of doing the transplant too, but none of my 3 siblings matched me. Now I am having second thoughts about having it. At what point do/did you feel like the quality of life was bad enough to take the risk or did the CMML start progressing faster?

Thank You for any response! :)

Mark P

I was diagnosed with CMML January, 2009. It is rare+ 1/100,000 persons have this disease. I teach in a Nsg. Program, so, did so much research on this diagnosis.

Get back to me if you want to discuss further. I am being treated at a Research Infusion Clinic in San Francisco, California.