CML (CHRONIC MYELOID LEUKEMIA)

chhabrags
chhabrags Member Posts: 1
edited March 2014 in Leukemia #1
HI!
I AM 50 YRS OLD AND HAVE BEEN RECENTLY DIAGNOSED AS A CML patient and would like to know about more people with the same disease AND WHAT TYPE OF TREATMENT ARE THEY TAKING.

Comments

  • dlemerise
    dlemerise Member Posts: 1
    #2
    Hi, i'm denise. last night CBS news had a segment about some great new chemo called T-1 that is in pill form (given outpatient)and has virtually no side effects because it only kills the cancer cells w/o affecting the healthy ones. everyone was so excited because it had such a high success rate. maybe you should ask you dr. if he has heard of it. FDA has it right now, i think. don't know if it will help me. i am 48 yrs. old and have acute myelocytic leukemia. have had three rounds of the usual chemo and am currently "clean" but not on remission. good luck and prayers to you.
  • thriver
    thriver Member Posts: 3
    #3
    dlemerise said:

    Hi, i'm denise. last night CBS news had a segment about some great new chemo called T-1 that is in pill form (given outpatient)and has virtually no side effects because it only kills the cancer cells w/o affecting the healthy ones. everyone was so excited because it had such a high success rate. maybe you should ask you dr. if he has heard of it. FDA has it right now, i think. don't know if it will help me. i am 48 yrs. old and have acute myelocytic leukemia. have had three rounds of the usual chemo and am currently "clean" but not on remission. good luck and prayers to you.

    This new drug for cml is incredible! Can u imagine a pill instead of an atomic bomb? The bmt was described by my bmt doc as "killing an ant with an atom bomb" which is pretty much true.

    I am very interested in how it works. Does it wipe out cancerous cells, just those with the ph chromosome, or just keep them from reproducing, or what? Is it a cure, or a "band-aid", not that it matters, as long as it works!
  • mdabdulalim
    mdabdulalim Member Posts: 1
    #4
    HI!

    I AM 28 YRS OLD AND HAVE BEEN RECENTLY DIAGNOSED AS A CML patient and would like to know about more people with the same deseases and how to get GLeevec in india how to order it from NOVATIS,they have launched it
    regards
  • rebecca21
    rebecca21 Member Posts: 5
    #5
    hi i am 21 with cml, i am going in for my transplant this month, right now i am taking shots of interfieron, about 3 times a week it used to be 7, have you had a transplant?
  • carol sue pipkin
    carol sue pipkin Member Posts: 1
    #6
    Hello,
    I am 60 years of age and was diagnosed in July, 2001 with CML. I have been on Gleevec since September, 2001. Had bcr/abl blood test in February, 2003, which tells me I am in remission. I am still on 200 MG Gleevec per day. Would like to hear from others taking Gleevec as the initial treatment for CML.
  • tarishawna
    tarishawna Member Posts: 8
    #7
    carol sue pipkin said:

    Hello,
    I am 60 years of age and was diagnosed in July, 2001 with CML. I have been on Gleevec since September, 2001. Had bcr/abl blood test in February, 2003, which tells me I am in remission. I am still on 200 MG Gleevec per day. Would like to hear from others taking Gleevec as the initial treatment for CML.

    I am 57 today. On 9/12 I went to the blood bank to give platlets. That's where I found I had a 37,000 white cell count, from there I went to the local cancer center (Spokane, Washington). After talking with my doctor, I decided to go to Portland, Oregon to the Oregon Health Science University where Gleevec was started. I began the test program in October with 4 pills of Gleevec and injected Interferon (chemotherapy) into myself. After my first three month visit, I was "in remission" already. I had to be on the program for one year. In July I became allergic to the Interferon so they stopped that but I continued on the Gleevec. I had my year end testing in September and everything was fine.

    In March I had my first six month checkup and am waiting impatiently for those results. I go back in September again.

    I have worked during this whole time. My favorite pasttime is cross stiching which helps pass the time and gets my mind on something else.

    I still get a little fatigued and my red cells are down but I'm taking it one day at a time. I'd better sign off or I'll just keep babbling on.

    Where are you from? Where do you go for your testing?
  • tarishawna
    tarishawna Member Posts: 8
    #8
    I just turned 57 today. Where to start. I found out on 9/12/01 at my local blood bank (I had given 58 times my platlets which are to help build the red blood cells for those with cancer)with a 37,000 count and then went to the cancer center here in Spokane, Washington. My doctor talked to me about a test program in Portland, Oregon at the Oregon Health Sciences University where they developed the pill Gleevec. I started on the pills and Interferon (chemotherapy) that I inject myself with. As of March 2002, they were unable to locate any leukemia in my system. In July I became bothered by the Interferon and was taken off. In September 2002 I finished my year on the program but still go down twice a year. In March I had my six month test but haven't heard anything on the results. Its takes 3-4 weeks to do the deep testing. In September 2003 I go and have another test. I'm not sure how long I will be doing the test but its a couple days off from work. So which is the lesser of the two evils?

    I have worked during the whole time since I found out I had leukemia. My office is great to me and I leave at 3:00 as I get tired.

    I am now only on the Gleevec which I take four pills a day. I better sign off so this gives you a chance to ask me questions. Later!
  • tarishawna
    tarishawna Member Posts: 8
    #9
    mdabdulalim said:

    HI!

    I AM 28 YRS OLD AND HAVE BEEN RECENTLY DIAGNOSED AS A CML patient and would like to know about more people with the same deseases and how to get GLeevec in india how to order it from NOVATIS,they have launched it
    regards

    Okay here is what I know, which may not be much.

    I was on the test program for Gleevec. I live in Spokane, Washington and I can get my pills through my drug store. The FDA approved it being sold to the public back in June of 2001. If you are in India I would maybe check on the internet with NOVATIS and contact them if you don't have a local drug store.

    I am 57 today. I started taking Gleevec in October and by March I was already in remission "knock on wood". I had my year test in September 2002 and just had my next six month in March and am waiting for those results.

    If its any help to you, just take one day at a time. Later!
  • dmatweecha
    dmatweecha Member Posts: 1
    #10
    carol sue pipkin said:

    Hello,
    I am 60 years of age and was diagnosed in July, 2001 with CML. I have been on Gleevec since September, 2001. Had bcr/abl blood test in February, 2003, which tells me I am in remission. I am still on 200 MG Gleevec per day. Would like to hear from others taking Gleevec as the initial treatment for CML.

    I am also on Gleevec and so far so good
    I take 600mg per day and getting close to remission phase
  • JONJON64
    JONJON64 Member Posts: 1
    #11
    CML
    HELLO MY MOM HAS CML.SHE WAS DX IN 2006 WITH CML. SHE HAS BEEN ON GLEEVAC,SPYROCEL AND NOW TASIGNA. WE WERE JUST TOLD THIS WEEK THAT SHE HAS STOPPED RESPONDING TO THIS CHEMO. NOW THEY ARE LOOKING AT ATTEMPTING TO GET HER IN A CLINICAL TRIAL. WHERE DO WE GO FROM HERE? I AM SCARED TO DEATH OF WHAT MIGHT HAPPEN.
  • Unknown
    Unknown
    #12
    This comment has been removed by the Moderator

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