CML

jko1814
jko1814 Member Posts: 6
edited April 2023 in Leukemia #1
anyone out there have CML chronic myelogenic leukemia

Comments

  • MC04
    MC04 Member Posts: 39
    #2
    CML surv.
    Hi jko, I am a survivor, dx'd 2004 and still around. What can I help you with?
  • Oscar0914
    Oscar0914 Member Posts: 32
    #3
    CML
    Me since Nov 2005.
  • seraph77
    seraph77 Member Posts: 2
    #4
    CML Survivor
    I was diagnosed in December 2010. I am currently in hematologic remission, and on my way, hopefully to complete molecular remission, thanks to early diagnosis and Gleevec. Blessings to you in your own struggle with this disease.
  • danicachacon
    danicachacon Member Posts: 1
    #5
    seraph77 said:

    CML Survivor
    I was diagnosed in December 2010. I am currently in hematologic remission, and on my way, hopefully to complete molecular remission, thanks to early diagnosis and Gleevec. Blessings to you in your own struggle with this disease.

    CML
    I was diagnosed in December of 2005 with CML and I am currently in remission.
  • bcreed1227
    bcreed1227 Member Posts: 2
    #6
    i have had cml

    i have had cml
  • jeroen
    jeroen Member Posts: 2
    #7
    bcreed1227 said:

    i have had cml

    i have had cml

    CML
    I'm an ex CML patient.
    Diagnosed in 1987 . Age : 12 years
    Stayed under control for 3 years , than decided to take the chance of a Bone-marrow-transplant. ( 1990 )
    Had Chemo , Total Body Irradiation , Irradiation of the spleen.
    Although i'm a Belgian, had my transplant in London , UK.
    At that time only one ( 1) non-related-transplant had been done in Belgium.

    Since then I have been quite well.
    More easily than an non-survivor i'm having problems with normal colds, flu etc.
    Last year double pneumonia , H1N1-virus , but came through quite quickly.

    Otherwise no problems untill now.

    Having a good contact with my English Bone-marrow-Donor


    All the best to you all
  • Katsietoo
    Katsietoo Member Posts: 1
    #8
    MC04 said:

    CML surv.
    Hi jko, I am a survivor, dx'd 2004 and still around. What can I help you with?

    Still around too...:)
    Hi! I was diagnosed in 2005, and have been taking Gleevac 400 mg. 1 x da. since then. So far, so good. However, I am worried about some minor changes in my white count. My oncologist has assured me that I am within the normal range, but the truth is, I don't really know enough about CML to feel reassured. I trust my oncologist, but he is not very forthcoming with information, even when I ask questions.

    My oncologist has saved my life three times since I turned 42. Back then, I had medulary (sp.) type breast cancer on one side. Twelve years later, I was diagnosed with CML, then 5 years ago, breast cancer in the other side, different type. He called it a "garden variety". Instead of suffering through radiation again, I opted for a bilateral mastectomy.

    I think my concerns are normal for me, after all of the above. I guess I just want to talk to those who have been through the wringer, like me. It helps me feel like I am ok.

    Hope you are well, and stay that way! Ty.
  • beverly1957
    beverly1957 Member Posts: 5
    #9
    Katsietoo said:

    Still around too...:)
    Hi! I was diagnosed in 2005, and have been taking Gleevac 400 mg. 1 x da. since then. So far, so good. However, I am worried about some minor changes in my white count. My oncologist has assured me that I am within the normal range, but the truth is, I don't really know enough about CML to feel reassured. I trust my oncologist, but he is not very forthcoming with information, even when I ask questions.

    My oncologist has saved my life three times since I turned 42. Back then, I had medulary (sp.) type breast cancer on one side. Twelve years later, I was diagnosed with CML, then 5 years ago, breast cancer in the other side, different type. He called it a "garden variety". Instead of suffering through radiation again, I opted for a bilateral mastectomy.

    I think my concerns are normal for me, after all of the above. I guess I just want to talk to those who have been through the wringer, like me. It helps me feel like I am ok.

    Hope you are well, and stay that way! Ty.

    Also still around
    Hi, I was diagnosed in 1996 at the age of 39. In October of 2012 it will be 16 years. God has really been with me through the ups and downs, mostly downs. It's alright because things could have been different. There is always someone worst off than you.

    I agree that most oncologist don't give information freely. My first medication was Interferon and Hydrea. After years of the previous medication. I told my first oncologist about a clinical trial for Gleevec,it was called STI571. He was able to get me in the clinical trial that he had no information on. I found the information on-line. I started taking 400mg and it was then increased to 800mg. It was no longer working because I had been on it for 10 years. I just recently began taking Sprycel.

    Over the years I have gone through a lot. My faith has gotten stronger over the years. I still struggle. I'm thankful to be alive.
  • mlaylaurance378
    mlaylaurance378 Member Posts: 1 *
    #10

    I need support and Advace please.I diagnose with CML last year.I have 28 years old. I am from Tabzania. The story is like this I went to the first hospital they told me I have dengue fever.They told me to drinking a lot of water and paracetamol tablet but still it's was worse.I was feeling a lot of back pain and bone with a headache, I decide to go to another hospital that how they diagnosed this Chronic myeloid leukaemia CML but till now.I am in 400mg of imatinib.

    I losing hope from this I need help more, please 🙏

  • annsan96
    annsan96 Member Posts: 1 *
    #11

    I was diagnosed 3 yrs ago with CML. 8 yrs prior to this I was diagnosed with Stage 2 Non Hodgkins Lymphoma. I was taking Sprycel for CML but recently, after months of wonky lab results and horrible blood counts. I finally switched oncologists and medication. I've been taking a low dose of Gleevac. A month in and I can already feel a difference. I'm not sleeping all day, I feel aware and alert, and my counts are slowly coming back up. I am fully on board with my doctors medical plan for me.

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