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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  • Tabbykitchens

    Cml

    2
    I was just dx with cml. I'm on gleevoc and my arms and legs ache all the time my doc says it's fibromyalgia, I don't think so because I'm ache my face is dry and I am so fatigued all the time.does anybody have this problem
  • JohnnyPancho

    Emergency Supply of Tasigna..

    0
    Tasigna saved my life 10 years ago.As we sometimes find out, Tasigna and other oncolgy medications are often hard to get if there are insurance problems or the Doctor doesnt have all the righ connections to the drug companies. Doctors can allow you to buy it with as precrition but then it effects thier ranking with the Hospital or Drug companies. Sometimes you get cut you off- if you miss an...
  • Emilee

    Cml

    1
    I was diagnosed with CML at the age of 5. I am now 21 and plan on taking myself off gleevec in the near future to concieve a child. Ive been in remission for as long as i can remeber. Seems like i wasnt on the medication long an went into full remmision. Ive never been taken off the medicine but growing up i would forget to take it from time to time and nothings ever happen from it. Everytime i...
  • Bayougal

    Side effects for long term use on Tasigna

    2
    I was dx with cml in 2011. I was put on Gleeve for approx a year. I was then switched to Tasigna and have been on It for approx 5 years now. This last 9 months I have been dealing with alot of skin issues. My scalp is very Itchy and red. The inside of my eyelids are inflamed causing pain. My toungue is irritated off and on. My eyebrows are red inflamed and Itchy. My dermatoligist thinks It my...
  • ChristopherH

    Side Effects

    2
    I was diagnosed the Monday after the 4th of July 2015.  I was started on Gleevac and was taken off because it didn't "work as well as they thought it should".  I was then put on Nilotanib which caused me to be hospitised for pancreatitis and Liver issues after one week.  I was then put on Sprycell which worked for a year but then started causing fluid on my lungs. I had to have my chest...
  • nicole73

    Out of MMR

    1
    2 months ago my onc took me off  tasigna after failing that sprycel after not being able to tolerate GI side effects. I Had been in a deep remission for 3 years. Now my BCR is detectable again at .257% which means I will have to start treatment again. I don't know what other med i can tolerate. I hope I go back into a MMR again. Anyone else with this experience? I'm scared. 
  • ekksf5

    excessive sweating

    1
    Diagnosed in dec 2015. put on sprycel for a month but had so many side effects I was taken off and put on gleevec. I have had really bad night sweats but now it seems the sweats happen ALL the time. It's crazy. asked dr and he says it may be hormonal but I have already gone through menopause a long time ago. Anyone else bothered with this and if so how can I best cope? Im in an LOA from work...
  • Hiker

    New Member

    2
    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...
  • coachricky1

    side effects and getting off of Gleevec

    6
    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...
  • 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...