Chronic Myelogenous Leukemia (CML) Support Group

Chronic myelogenous leukemia affecst the balance of blood cells in the body, disrupting the normal balance. The cancer cells eventually begin to outnumber and push out the good cells, and could lead to anemia and easier bleeding/bruising. If you or a loved one is diagnosed with CML, this is the community to discuss your experience.

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  • coachricky1

    side effects and getting off of Gleevec

    5
    Diagnosed 9 years ago and put on Gleevec.  Been in full remission per the fish text for a few years now.  I'm 51 years old male and wanted to know 2 things.  Are these side effects of the disease or medicine and should I try getting off of Gleevec.  My body hurts daily like having the flu.  Vision has decreased, memory is bad, muscles hurt, cramps, tired, getting out of bed hurts but body...
  • Hiker

    New Member

    1
    I was diagnosed with CML 18 months ago.  I am on Gleevec and it has my numbers cancer cell numbers at less than .003 and the doctor is pleased.  2 months ago I went from 300 mg to 200 mg and feel much better...but have only 8 good hours a day. My endurance for any exercise is about 1/2 hour and can't begin to do what I used to do.  Not finding any information about how I might feel and the Doc...
  • omegas

    Not a success story kinda

    2
    ive had Cml for several years now and had some horrible experiences leading up to diagnosis that are lengthy. My thing is gleevek was successful but caused horrible muscle cramping so I was switched to sprycel which had less side effects but more expensive so insurance doesn't want you to have it. My counts are normal now but I have incredible bone and joint pain. I've been to rheumatologist and...
  • rnpnirav

    Having CML since 23 years

    2
    I am 73 years old. Was diogniesd as CML with 90 % PH+ve on May 11. 1994. I have started with drug "INTERFERONE ALFA-A (SC Inj.)with dose of 9 milions IU a Day and taken it for 7 years. During this period Iwas suffering from Fever up to 102.5 F  and body pain constantly. In December 1996 PH+ % was nil even though i have continued till January, 2001. At this stage PH+ % showed almost 100%. Means I...
  • Ryansmom

    NEVER USE THIS DRUG

    0
    My 31 year old son was told his PH+ CML was control able with Gleevec. He was on it few months still feeling well. Then they said it mutated and he needed to change to Tasigna. He started it January 13th by the 15th he was in the hospital they restarted him on the 17th. 2 months later he was DEAD. Do NOT take this medication 
  • deleted_user

    my 20 year old sone has cml

    3
    hi everyone....im a mother of a beautiful 20 year old boy and we have recently found out he is in the early chronic stage of cml.my world has come crashing down around me.it must be hard being the one diagnosed but when its your child there are no words of comfort.we found out on the 10th june 2013 so its still very raw.he seems to be coping well with no side affects at all from imatinib.although...
  • jimmel

    Leukemia & epilepsu

    0
    I got epilepsy almost 13 years ago. From m/c accident. Piece oh my head gone bones broken all over. And about7 8 months ago got this leukemia cal. It has increased the pain all over. Having a hard time to get drugs to stop them. They would have to be strong. I am on 2 a day of hydrocone(don't remember exact name) . But I still have incredible pain with that one. Have to move up with harder pain...
  • Fatima91

    Telling my fiance about my CML

    2
    Good evening,I was diagnosed with CML 4 years ago. I was only 21 years old back then.Anyhow, I have dated 3 guys since then, two of them were understanding regarding CML.I'm currently dating a guy (4 months now), and he has proposed to me, and I said yes as I can see a future with him.The problem is I haven't told him yet about the CML.When I first got t know him, I told him that I was diagnosed...
  • cmlveteran

    Generic Gleevec

    1
    i have been on Gleevec for 15 years now. Only side effects.......some cramping. Brain fog and ability to concentrate are a problem but I don't know if it Gleevec or all the radiation/chemo during my bone marrow transplant 25 years ago. Yes, CML came back 10 years after BMT. Now fow for my question. I can buy generic Gleevec through Canadian online pharmacies for substantially less than generic...
  • RebeccaJo

    New Member

    3
    Hi everyone. I'm new to support groups but I think it's definitely time for me to join one. Fair warning, this will probably be a long first post... I apologize. I'm in a unique situation where I am the primary caregiver for my 82 year old maternal grandparents. I've been trying to find books for caregiver for grandparents but there don't seem to be any. Here's a little background for you...My...
  • deleted_user

    New to CML

    i have had cml for about 1 month and been on gleevec for 3 weeks. this has consumed my life.will it get any better???????
  • Ta_scull

    Newly Diagnosed - n eone still on here?ist

    7
    Hi. Recently diagnosed with CML - WBC 294.9 and platelets at 1207. They've determined I'm still chronic, so I hear that's good. I am starting Gleevec soon. I am so scared, and my oncologist just seems like this is no big deal. ANyone have any words of wisdom or comfort?
  • lunabee

    Help for my Best Friend

    1
    Hello All,My best friend was diagnosed with CML about 18 months ago.  She currently takes Gleevac (sp?).  Since she started the Gleevac she has developed chronic diarrhea.  Long story short her oncologist says Gleevac causes diarrhea, as do the other medications that treat CML.  She was sent to a GI doctor, who has done nothing to help her.  The chronic diarrhea is starting to cause other...
  • Millerman62

    Hives?

    1
    Hi all and thank you for being here.  I was dx with CML one month ago and have been put on Gleevec.  After 10 days I developed a bad case of the hives?  Doc has put me on prednisone 4mg with no relief. To day I have discontinued the Gleevec with hopes that the prednisone will clear it up. Has any one else had similar experiences?  Trying to figure out what to expect from all of this. Thanks...
  • deleted_user

    wbc/basophil count

    4
    hi , can anyone tell me what their WBC and basophils etc counts were at time of diagnosis? im to see the haematologist in a week or two, my doctor has put some worry in my mind, thanks in advance. x