CMML Anyone ??

[hmblume]

I am a perplexed new kid with CMML. I just returned from the (20th) annual AAMDS-I Foundation Patient Education Conference in Denver. I guess I am not so new, better educated, but still perplexed.
Of the attendees/patients I counted 46 AA, 15 PNH, and 50 MDS. CMML was quoted at 16% and 10% of MDS, yet I was the only CMML patient there. I felt I belonged in a different ballpark with my CMML: no anemia, no TX, no side-effects, no iron overload, but also no new MEDs and not a lot of new promise beyond Vidaza…which only delays, not cures. Vidaza was quoted to me as a future MED at Stanford 6/04; I consult again in a couple of weeks and may have a better fix on how soon I will face Vidaza.
I took offence at a couple of speaker comments on CMML. The introductory video called it a “mishmash”. Dr. Silverman of Mt. Sinai said “dwindling” after CMML, and I am unclear if he meant dwindling interest, importance, or population. But it is clearly a far different branch of MDS than the various RA’s (and the World Health Organization now excludes CMML from MDS).

If any CMML patient is interested in setting up a separate CMML mailing list to discuss CMML only, please contact me offline via the directory.
Perhaps we can share a focused CMML experience set, without being lost in all the RA material.

[lindajo]

Dear hmblume, I am a patient that like you hasn’t had any of the medications for RA. Unfortunately I have had my classification changed from erythremic myelosis to MDS unclassified to RCMD(refractrory cytopenia with multilineage dysplasia). Although I had numerous transfusions in the early years I haven’t had one since 1999. I can relate with feeling out of place.

One thing I found out at convention last year is that the any patient can move from one classification to another. It all depends on what the bone marrow looks like at the moment. For example a 5q- syndrome patient imight have a name change if Revlimid cures the chromosonal abnormality. They might have to find a whole new category for those patients.

I don’t think the doctor meant dwindling importance but that as they get more and more sophistticated tests that classifications change. Under the French American British (FAB classification there isn’t a place for me) Under the World Health Organization (WHO) classification there is. They went from 5 classes to 8.

It makes it very confusing for all patients. Keep up on all the RA material. You never know when they will change the classification system or apply a new drug trial from one type to all types. Good Luck and remember we are all bone marrow failure patients. You aren’t alone, ever. Lindajo

[Jack_dup1]

There are not a lot of us out there. I was dx’d CMML 4/03. I have had no treatment yet. MY RBC’s have always been normal, platelets range from 72K to 118k, my WBC have risen from 3.2 to 45 over the last 28 months. I lead a fairly normal life, work every other week, this requires out of state travel. My Hemo wants me to start Vidaza, but I have put it off, I don’t know how much longer I can, I just go month to month. I have weird problems like my knee swelling abnormally from bleeding, they said it was a sac located on top of the knee. I have a bruise the size of a platter on my hip from a slight fall two weeks ago. I can’t complain to much considering some of the others on the site. I fall more into the MPD catagory than MDS, that’s the problem, they don’t know how to catagorize us.
Jack

[Jimbob]

Is it good or bad that there seems to be more people with and more information about CMML now then there was just 2 years ago? When I was first diagnosed, I search for months and the few references pretty much came back to the same original source – which was outdated and provided little hope. I also searched for others with CMML; Jack and a few others on this forum were about it. Since then, the numbers have more than doubled and we have been here for each other. I was and am very thankful for the support and information I have received from others here. Also the medical information and the experience with CMML at the various Centers of Excellence and other hospitals have increased significantly. I do not believe that this is not because this form of the disease has become more common but that it has become more recognized. I also believe that the protocols for treating CMML are finally being made. Unfortunately, this disease, like the other forms of MDS or leukemia, affects patients differently as do the possible treatments. Hang in there, hm, it will and you will get better. Just ask Marsha and a few other newbies.
Jim

[shirlsgirl]

Hi,

I wonder if my mom truly has CMML…I’m thinking possibly atypical CML?. Her mono’s are still in the normal range…she was diagnosed last October as having early CMML and although her wbc’s steadily increased her monocytes were never affected. Thankfully the Gleevec has brought the wbc’s back into normal range and now our concern is her hgb and rbc’s. (they have been on a downward trend)Mom has an appointment with her Hematologist today…nail biting time.

[Marsha]

Hi
Dx’d w/CMML 2/04,BMT 11/04. Presently no sign of disease. I would be interested in seperate mailing list. They told me that CMML is considered a myleoprofilerative/myleodysplastic syndrome. But when I looked these up it fell more under MDS. And of the 5 disease classifications under MDS, it was #5 and one of the severest. It is called “smoldering leukemia” but I was told it would go into AML quickly and I would have to get in a remission before transplant. I elected to do transplant while still in CMML. I am sure that as time goes on, there will be other classifications added. But I have heard that they (WHO) was making CMML a seperate disease. If I can help let me know. Knowledge is power.

God Bless, Marsha

[shirlsgirl]

Well, breathing a sigh of relief here!!!!

platelets 149
wbc 7.2
hgb 112 (low but same as last time)
rbc 3.48
hct .33
absolute monos 0.5

next appointment in 5 weeks. BMB to be done in October. Doctor was more upbeat this visit.

Jody

[Harold]

I was diagnosed with CMML 10/03. I have tried several study drugs at Duke University without results. I have been on Vidaza since 10/04 and I have had a good response, although not remission. I have been told the “average” response to Vidaza treatment is 8 months. My RBC is on the low side of normal, platelets hover around 30K, and WBC around 11-13K. I work every day and maintain a fairly normal life. I recently went to Fred Hutchinson for a consultation, specifically regarding bone marrow transplantation. This is a huge decision, especially for someone who generally feels good. I do think there is some confusion about CMML because it has been lumped together with MDS. There seems to be a growing consensus that it is a separate disease than MDS. I’d be glad to participate in a CMML group.
Harold

[Cherbear]

Hi,
I was dx’d with CMML 6/04 – I’m still on a “watch & wait” protocol, but that may change soon. My platelets are hovering at around 28,000 – when I was dx’d, the platelets were at 50,000. My blast count is low (2%), and the wbc’s, rbc’s, and hct low normal. The monocytes are very high. My hemo told me that the only “cure” is a transplant, but I have to get worse before it is considered. I’m feeling okay, but suffer from bad headaches, fatigue and many bruises and petechia. I get monthly bloodwork and bi-monthly hematologist appointments. I was going to start Vidaza in June when my platelets dropped to 27,000, but didn’t because of the numbers going up a little 2 weeks later. Now the numbers are down a little and I have no idea what’s to come. I have the dr. appt. tomorrow and we’ll see.
I feel the same way – CMML has been put with MDS/RA and it’s hard to get specific info on it. Yes, a CMML mailing list would be VERY beneficial!
As Marsha said – “knowledge is power”!

Hope and blessings,
Cheryl

[Jimbob]

I foorgot to add – yes, I would be interested in a CMML mailing list.
Jim

[shirlsgirl]

Oh yeah….me too please.

Jody

[Indiana Jack]

I too would be interested in a CMML mailing list. My circumstance continues to be one of ‘watch & wait’ with monthly CBC’s and visits to a Center of Excellence 4 to 6 times per year.

[Ensnee]

I’d like to be in on the mailing list, too. Presently Hans is doing extraordinarily well on this round of re-induction chemo. He’s become famous for his amazing absence of side effects (except for low platelets) and his energy. As one nurse said, “He’s never in his office!” On Day 31 (today) his WBC finally came up to .3. They let him out on a day pass today! We went and walked around for a couple of hours, but he didn’t want to eat anywhere in a restaurant just yet. Also, it was so beastly hot I couldn’t stand it anymore! I guess he’ll be having another BMB soon. Praying that he will be in remission, and can go on to the two rounds of consolidatin chemo, and then a stem cell transplant.

cheers,
Esme

[Kathryn]

Hello, I would like to be on the list as well.

Thanks!

Kathryn

[greg]

Hi, all cmmlers. It seems decitabine, a relative of vidaza, may do even better for all of you. I’ll post a trial result in the am. My mom’s doc said wait for decitabine, as did a doc at md anderson. peace, greg

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