CMML

[JOCELYN]

Hello
just found out Thursday that might disease, advanced into CMML, where is the best place to get information on CMML ?
Thanks.
Jocelyn

[hmblume]

Jocelyn, CMML is a small (10%) of MDS patients.It is hard to find a lot about it. Call the MDS-Foundation, the AAMDS-I Foundation, and Leukemia & Lymphoma Society offices (800 numbers); they will send you stuff. The literature is pessimistic. Find a local support group if you can. LLS has local support groups; AAMDS-I has a Bay Area support group.

You are not alone, but also it will take a long time to find matching symptoms and experiences.

[Marsha]

Jocelyn,

I was dx’d with CMML in 3/04, I searched for info and what I found was very little and not very encouraging. At that time they had put CMML in with MDS as one of the severest forms, but has since become a disease of its own. You may find more info in the Myleproliverative disease (Sp). What I know is that it is considered a preleukemia or “smoldering” leukemia there is no cure except a BMT/SCT, chemo doesn’t really help, tho at this time they are working on some meds that keep it at bay. It is not as severe as acute myleocytic leukemia, but more severe than chronic myleocytic leukemia. They gave me about 24 months, it will eventually go into acute leukemia. I had a MUD BMT in 11/04, and am doing well, I am making my own cells and other than having some difficulties from after effects I am back to work, and really feeling pretty good. I am sorry that you had to come here, if you need more info, that I can help with don’t hesitate.

[CarolineG]

Jocelyn,

My Dad is 79 and was diagnosed with CMML last summer after having had MDS for over 3 years.

I was very discouraged by what I read on the Internet. All of the sites that I looked at made the prognosis sound very grim.

Dad’s Oncologist told us that CMML is a very slow moving cancer and that we shouldn’t put too much stock in what we read.

If you go back through the forum, you will find alot of people who have CMML and who have given very good descriptions of what the disease is. There are also people who have beaten the odds according to how long they were told that they should live.

Take a deep breath and don’t expect to get all of your answers in one reading.

If it helps any, my next door neighbour is a Microbiologist who operates a Blood Bank in a large hospital. He is working towards his PHD. He is writing his thesis on CMML. He told me that it is usually NOT the CMML that proves to be the problem. It is other organs and systems which get affected and sick as a result of diseased blood. His advice…above all other advice…is to keep the immune system as healthy as possible.

There are some people on this forum who have a wealth of knowledge in that field. Jimbob, Patti, Neil…to name a few off hand. Read what they have had to offer in past posts. You will get a good start. Then, find someone in your area who is knowledgeable in natural medicine and ask some questions about your immune system. You are young and have alot of options.

Best wishes Jocelyn,

Caroline

[Jimbob]

Jocelyn,

I am sorry to hear that your mds has become CMML, but do not become overwhelmed. There are a number of people on this forum that are recovering from CMML after having a SCT and some that are working on keeping it at bay by natural methods. I am sure that many will be happy to help you in your efforts to recover.

Are you working with a center of excellence? I remeber that you were thinking of moving back to Canada, where are you living now?

To get some information on CMML you can do a google search or follow this link:
http://www.google.com/search?hl=en&q=chronic+myelomonocytic+leukemia&spell=1

Realize, though, that a lot of what you find is a bit outdated. I will try to send you directly some of the more current information that I have found along with personal experience. Biggest thing, take care of yourself and keep a positive attitude. CMML rates and affects can vary greatly from person to person. Do not get hung up on statistics.

I believe that the best thing anyone who has become stricken with disease can do is to give the body as clean a start as possible. Because disease is either caused by “garbage” in the body or adverse environmental factors, just treating the symptoms is not going to be enough to get well again. Personallly, I used a naturpathic, acupunturist, nutritionist with successful experience in treating MDS patients to guide me. It may be hard to find someone but try. Getting the body in shape can only help you in beating this disease.

I am a little swamped with some family thngs right now but will do my best to answer whatever questions I can for you.

Jim

[Judie]

Jimbob, How do I find someone who deals with the natural, organic and alternative methods/diet. I have never used any prescriptions before and would love to supplement my treatments with natural means. I am supposed to start Vidaza next Monday and am really concerned about the side effects. Would love to hear from you. Judie

[Reyhan]

Hello Jocelyn
Just 2 weeks ago FDA approved Decitabine (brand name: DACOGEN) from MGI Pharma. Dr. Kantarjian at MD Anderson Cancer Center in Houston prescribed it for my father who has CMML.
It seems this is a brand name drug that could work for CMML.
Good luck.

[patti]

Judie,

The naturapath that you found in San Diego should be able to do all of that for you. Do you know yet if you hit remission with last weeks chemo? Is the Vidaza to maintain a remission? I know a number of people on this list have had success with Vidaza making them transfusion free for long periods of time.

Someone help me out here – is Gleevec also used for CMML or is that one of the other leukemias? I can’t remember and I wondered, Judie, if your docs have mentioned it?

Take care,

patti

[Jack_dup1]

Less than 5% of CMML patients restpond to Gleevac, you have to have a certain chromosone abnormality, I don’t remember which one. I was on a Gleevac study for 6 weeks.
Jack

[Jimbob]

I don’t remember what chromosone it is either. Gleevac is normally used to treat most forms of CML, with a single M

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