CMML Anyone ??

[greg]

also, wondering if any of you had any tricks for increasing platelets. jimbob? thought you said noni pills or pineapple juice once/? thanks, greg

[patti]

Greg,

My MIL is juicing a 1/2 pineapple twice a day and taking 1 tbls of black sesame seeds 3 x’s a day. Seems to keep her hovered around 19k platelets. When she slacked off to 1/4 pineapple a day she took a huge drop and started showing signs of bleeding. She kicked it back up and now her symptoms of bleeding have disappeared. Won’t have an actual number for where she’s at right now until next week.

Patti

[Caroline]

Hi,

I would also be interested in being added to a CMML Mailing List please.

Thanks,
Caroline

[Jack_dup1]

This won’t help for me, my WBC is 36.5, I need mine lowered.
Jack

[Luke and Margaret]

Hi there
I feel like I’ve come out of the desert into an oasis! My husband was diagnosed with CMML in Toronto on August 18. Ever since I have been trying to a) find out what this is, and b) how it is treated. Like most of you I have found a maze of dead ends, and still have not figured out whether this is leukemia, MPS, or a “snowflake”. Some sites call it CMMoL; that term led me here, after a long wander.

Since diagnosis Luke has developed DVT, pleural and cardial effusions, and from out of nowhere a left ventrical function reduction, the latter which seems to have ruled out any form of chemo or perhaps a SCT. Our oncologist had never heard of Vidaza, which will tell you somehting about our current state of alarm.

We’re headed to Princess Margaret (Toronto) hospital for a further consultation re: SCT. Does anyone know if there is a CMML specialist at that hospital??

Thanks for being here!
Margaret

PLEASE, let’s develop that mailing list, and put me on it as an “urgent screaming situation”. Luke blasts increased from 8% to 12% in 4 weeks, so I have the feeling that this is going to be a very, very difficult ride.

[Ensnee]

Margaret, my husband was diagnosed with CMML in June 2004. It turned acute last March. He has been treated since then at PMH, and has done 2 rounds of induction chemo, and recently finished 1st round of consolidation chemo. If he stays in remission through the next round, he will then have a SCT. His brother is a perfect match. If your husband is having heart issues already I don’t think they would do any chemo, let alone a SCT, for the chemo for that is even harsher. They are very knowledgable at PMH. If you’d like to speak to me on the phone, please email me and I’ll send you my phone #. (We live in Burlington.)

many hugs,
Esme

[Caroline]

Hi Luke and Margaret:

We are in Cambridge. I mentioned Vidaza to our Oncologist’s nurse as well. She did not seem at all familiar with it. I wonder if it is only available in the United States. Do any of you Canadians know if Vidaza is available here?

Caroline

[Ensnee]

No, it’s not approved here, although it is possible to have it imported through Health Canada on an emergency basis. The hematologist my husband went to before he turned acute, and was referred to Princess Margaret Hopsital, did not know about it until I told him. Subsequently, he was at a conference and learned more about it, but he was not too impressed by it. Hope that helps!

Esme

[JulesH]

Hi everybody,

Your experiences sound very familiar to me.

In June of 2003 I was told that I had a pre-leukemic condition which appeared to be MDS.

My WBC was 17, HGB 9.5 and platelets 120. I was given 2 different bone marrow biopsies in a period of 3 months with 2 different diagnosis. One oncologist said I had 2 different blood disorders neither of which were leukemia. The other oncologist said he found leukemic cells and his was the first biopsy.

I was referred to the Moffitt Cancer Center where it was decided that they would just check
me every three months.

Suddenly in July of 2004 my WBC skyrocketed to 98, HGB went to 7.5 and platelets down to about 40.

From July to December of 2004 I received about 50 units of blood to keep my HGB above 8.0.

In August of 2004 one doctor recommended VIDAZA, while another said I did not have the kind of disease that VIDAZA was developed for.

I was started on VIDAZA in September of 2004 and I had my last blood transfusion on December 2, 2004. Currently I am on 6 week cycles for VIDAZA and my WBC ranges are 5.5 to 14, my platelets are 120 to 260, and my HGB is 9.2 to 10.7.

When I asked about why they finally settled on calling my disease CMML, I was told that there were several different diseases classified under CMML.

Add me to the CMML list.

[Jack_dup1]

Jules,
Thanks for posting, I am close to where you were, my wbc’s goes up every month, I have resisted VIDAZA to this point, but will have to reconsider when my whites get too high, now at 36.5, platelets 114k.
Jack

[Luke and Margaret]

Now that we have members of a CMML list – what happens next?
M

[Carrie]

If you all get yahoo accounts, you can create a yahoo group with a message board on it. One person can create it and you can limit the group to invite only. You just have to know the people’s email addresses to make sure that they’re legitimate. If you leave the group public, you’ll eventually get advertisements (including adult sites).

My fiance created a car yahoo group. If you have questions, just ask me .
Carrie

[Luke and Margaret]

Yahoo groups would work very well, I am already in another one. Usually a moderator sets one up and issues invitations to join…. fo we have a moderator?

Husband, Luke (58), CMML (August 18, 2005). W&W

[Luke and Margaret]

Big surprise yesterday – almost two weeks after a blood transfusion, Luke’s hemoglobin was still 117. We’ve been juicing hemoglobin supporting fruits and veggies twice daily, and using essiac tea three times daily. Who knows what it is that’s doing it, but we do appreciate a period of time with relative well being.

Back to PMH next Tuesday to discuss options, including Vidaza. Next Wednesday we get heart testing to see if the heart has begun to repair itself.

There is significantly less coughing and expectorating re: the pleural and cardial effusion that is secondary to a particularly nasty virus, so there is some hope that things might look a little better in the scans and pictures.

The search for a SCT donor has begun. If th universal energy is with us, he may be ready and a donor found at the same time.!!! ????

[Caroline]

My fingers are crossed for you, Luke and Margaret.

Caroline

[Author]

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