CMML

[choijk]

Hi,

I was wondering if anyone on the forum new anything about CMML. I was just doing some research online and found on one website that it is a subcategory of MDS/MPD. My dad was diagnosed with MDS/MPD however, a hematologist from UCLA indicated that he did not agree with the MDS/MPD diagnosis and thought that my dad is RCMD.

I found that the patients dx with CMML tend to have higher monocytes in their white blood cell counts. My dad ranges roughly from 13-18%, although his white blood cell count remains normal.

I am not too familiar with CMML and was just wondering if anyone can share their thoughts and experiences with me. I am going to bring it up to our doctor in our next visit.

This has been such a roller coaster ride. My emotions are everywhere but the worst of it is, I am in constant fear. Fear for just too many different reasons. I know I should focus on "today" and not "tomorrow" but it's hard not to when I am trying to research the best treatment plans for my dad and to learn more about his condition. I am just so scared right now.

Anyhow, thank you for any advice and knowledge you may be able to share. God bless everyone.

[Wendy V]

Hi.... nice to touch base with someone. I am a 64 yr old female, raising a grandchild, extremely fit and healthy, no symptoms. BUT on 1/11/07 I was told I have CMML. Since then, I have been to 3 Haematologists... all confirm the diagnosis, and all say "watch and wait" I am finding this soooo hard! I have quit work, and thrown all my energies into trying to understand and deal with this disease. because I feel healthy and have no symptoms, it is quite surreal to me, and I have plummeted into depression.... just grappling with the concept has been overwhelming. The fact that there is neither chemo, surgery or radiation, has led me to believe my health is in my own hands. I feel as though someone has 'pointed the bone' at me. They say you are what you think: well, I have always believed I was strong, healthy and would live an active long life. Suddenly the medicos are saying" Nope!! That's not for you! You've only got a few years left". I am reluctant to believe them.
I have only told a few very close friends: those I think can actually help me.... with meditation etc. Have not told my daughter, whose child I am raising.
I will send some details of my recent blood results next posting. Nice to talk to someone!
Wendy

[cjfaust]

what were the results?

[nimesh]

My father just go diagnoised with CMML-2 . I would like to get some help on

what kind of treatment are possible..
He is currently in perfect heath conditions, though he complain of some weakness

What are the effect of CMML , what do I expect on the prognosis

Any kind of advice is deeply appreciated

[Ellen Siqueira]

Hi, my mother was diagnosed with CMML in 2006. She was 48 at the time and now she's stable, always with 600 neutrophils. The only problem is that she's always really tired, besides having an eyesight problem (a degeneration of the corpus vitreum) that's making her almost blind. The doctors also say that the best to do is to wait, so now we're trying to cope with all of this...


Sorry if there are any spelling mistakes (I'm from Brazil and sometimes I mix some words)

[Hardyinc]

I was diagnosed with CMML-2 initially at UCLA where I went to my Dr.'s Number 8-12. That was in 2002. They told me the only treatment was a Bone Marrow Transplant. Then I went to Dr's in Utah where I was told the same thing. My 1st symptoms were high fevers every 8-12 days lasting 3-8 days. Incredible fatigue, and muscle pain. Then in Oregon in 2010, My fevers took a terrible turn for the worse and was admitted 3 times with in 5 weeks, 6 days each time. Another Bone Marrow test, then my 3rd since 2002 indicated higher white blood cell counts. Started Vidaza shots (135 7 times each month). It has completely relieved the symptoms and my energy is better than since 2000. I know it won't last, but it's been a great relief for now. I'm now seeking a transplant at Huntsman in Salt Lake City. Let me know what your success has been with any similar treatments.

[FrednGlitz]

Why is so little known about CMML. The last post on here was in 2011 with several people asking for information, but no replies.

I would like to better understand CMML..... can anyone help please.

Thanks.

[CANDY16]

This illness is not life threatening in most cases. Slow mover. Treatment depends on platelet courts. Usually treated when drops below 30,000. I am retired nurse with husband who has it. He has no symptoms. Monocytes are very high. Can develop down the line into AML. Doesn't' happen too often luckily.