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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  • 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?
  • cmlveteran

    Generic Gleevec

    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...
  • lunabee

    Help for my Best Friend

    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


    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

    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
  • AndreV

    Changing from Gleevec to Tasigna

    Hey there, Its been some time since my last post. I have been reading a lot the CML support group. Everyone is always so helpfull.I am on gleevec for 18 mo now and I have a great molecular response 0.01%, however secondary effects are quite hard, especially the fatigue, which has never subsided since the beggining of treatment. Somedays I can't even work. I also have eye edema and lower melanin...
  • deleted_user

    Brand new diagnosis

    I have just been diagnosed... I am still in the "unbelievable stage!" I have my first appointment with an oncologist tomorrow. I just needed to write this down, so it might seem real. Of course, I'm looking for support and understanding. This seems to be the place.
  • deleted_user

    Ten years and counting

    I just surpassed 10 years surviving with CML. December 7th pearl harbor day was my ten year mark. To say that the diagnosis for me was life changing would be a gross understatement but here I am living. The biggest allies I have are hope, positive thinking and self education. I was on Gleevec for 6 six years and now I'm on sprycel for the last four years. When I was diagnosed my white...
  • marym-valentine

    Eye Irritation

    I have been on Tasgina for about 16 months. It is working very well and I have long since passed MMR. Side effects are minimal.I have noticed a new thing and am wondering if anyone else has experienced this: Eye irritation. Sticky eyes in the morning that kind of lasts all day. Itchy and irritated... as if I have hay fever (but I don't have hay fever -- never). It's super annoying.
  • I've been on Gleevec (400 mg/daily) since 6/2011. Since starting the medication I've had mild side affects as many do and more noticeable, the occasional muscle craps, sometimes small muscle groups like hands/figures, other times major muscle groups like calf or thigh muscles or even back or stomach muscles when bending over or stretching. I know I'm 4 yrs older than when diagnosed, but has...
  • I have been recently diagnosed. Just before Christmas in fact. [Ho-ho-ho.] My first dosage arrived December 23. I keep wracking my did this happen? Was it because I was a welder? Because of all the gum I chewed? Is it sanding dust??? It doesn't run in my family. My husband says it is just bad luck which is little consolation. I know I will never know but it drives me crazy. We've just...
  • mslala

    Wanted to say Hello

    Hi all. I was dx with CML Aug of this year. I'm on Sprycel 100mg. Everything is going well except late I've noticed alot of hair shedding :-( I had some Pleural Effusion but thankfully that cleared on its own. Anyway so glad I found this group!
  • AndreV

    Brain fog on imatibib

    Hi, I think now my worst side effect from glivec is brain fog, difficulty concentrating and memorizing things. This affects my work and daily life.Does anyone have found a way to deal with this?Thank you all!
  • My husband is in the process of being diagnosed with CML. However, the quantitative RT-PCR was negative for fusion gene transcripts. BCR/ABL1 was not detected but could potentially be present below the detection level of the test.Does anyone have experience with this result?
  • SeeNew abstracts at EHA 2015 abstracts at ASCO 2015