CMML

[Anthony]

Hi,
This is my first message. I’m from Australia and would like to hear from anyone with CMML. My brother was diagnosed when he was 8 years old and is now 22. He has not undergone any treatment yet but his infections are becoming more frequent. A bone marrow transplant, we have been told, is his only chance and unfortunately my sister and I are not matches. I am interested in learning about any new clinical trials and ways to boost my brother’s immune system.

[greg]

Anthony: My mother has cmml, and most cmmler’s are older on this site. You should check the Hutchinson hospital cancer and transplant site, as the are the real trailblazers in bmt. best luck, greg j

[Jimbob]

Anthony,
You can find a lot of information about CMML by doing a search at http://www.google.com for Chronic Myelomonocytic Leukemia. There is a lot more information availble ther now then there was when I was diagnosed in Feb 2004. BEWARE though, about any information regarding survival rates: they are usualy based upon groups that are now outdated. I believe that the rate is now much higher in just the past couple of years. Even if no siblings match, a transplant can still be done with a matched unrelated donor (MUD). I encourage a transplant as soon as a donor can be found. You can also find a lot of information by reading through the past year’s postings here. There are numerous references to other good sites posted by people who have gone through this disease.
I did have CMML but after a SCT I am now completely CMML free. I am having some problems with the after effects of the medications and treatment methods but I will get over that too. Wish I could offer more but I am a little slow lately.
Will be praying for your brother.
Jim

[shirlsgirl]

Oh my Anthony,

Your brother is so young and has been battling CMML for so long!! How are his counts? Does he have any abnormal chromosomes? Has he been typed to see if suitable bone marrow donors are out there?

Jody

[Kathryn]

Anthony, my father was just introducte to a trial specifically for CMML that is going on at a couple of the Centers of Excellence (MD Anderson & John Hopkins, I believe) here in the states. It is in the first phase and at the office that my father went to there was only 5 patients participating, since CMML is rather rare. My father wasn’t a candidate though. I believe his age and his health disqualified him. If you would like the name of the doctor & his group, I would be more than happy to get that for you.

Also my friends mother, who has lung cancer, was participating in a trial at the center in Tampa, FL. I don’t if it would be appropriate for CMML, but she was going for treatments to boost her immune system.

Possibly your brother’s doctor could call the centers &/or the doctor and find out if any of these would be appropriate for him. You never know!

I will keep him in my prayers.

Best wishes,

Kathryn

[Anthony]

Thanks to everyone who responded. Your suggestions were very useful. At present my brother has just recovered from shingles and now has a chest infection……the journey continues!!

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