Are there any survivors with CML with a diagnosis since 2005 or earlier??

NADI
NADI Member Posts: 2
edited April 2011 in Leukemia #1
My husband recently learnt that he has CML. In December 2010 he went for a regular blood work after I saw he was loosing weight when we got the news that he had to go to the emergency room right away. He spent Christmas in the hospital, that is where we celebrated our first Christmas together as husband and wife. He is currently on the "miracle" drug Gleevec but what I would like to know is if there are anyone out there who has been using this drug since 2001 to 2005 and is still alive?? Please let me know and give me some hope.

Nadi

So after writing this letter 10 mins ago my husband came with a new prescription named Nilotinib... Gleevec is not working for him......

Comments

  • Oscar0914
    Oscar0914 Member Posts: 32
    #2
    CML Info
    Hi Nadi,

    There are a lot of people who have been on Gleevec for many many years. I personal know several people who have been on it for over 8 years now. I was only on it for about 10 months and had to switch to Sprycel due to side effects. I was on Sprycel for about 6 months and I was once again switched to Tasigna (Nilotinib). I have been on Tasigna for almost 3 and 1/2 years now. I have been PCRU (in a molecular remission) for over 3 years now as well.

    I can read the concern in your voice. It is quite common to feel like your husband is the only one out there with this rare form of Leukemia, he is not. I am going to give you the names of a couple of good websites you can go to, they are discussion boards where you can post questions or comments and read what other people in the same situation have already dealt with.

    http://www.newcmldrug.com/amn_Discuss/default.asp

    http://health.groups.yahoo.com/group/cml2/

    Here are some other really helpful websites you should check out.

    http://www.nationalcmlsociety.org/

    http://community.lls.org/blogs/lls/2009/08/24/new-online-chat-for-chronic-myelogenous-leukemia-patients

    http://www.lls.org/diseaseinformation/leukemia/chronicmyeloidleukemia/

    http://www.cancer.org/Cancer/Leukemia-ChronicMyeloidCML/index

    I hope this helps, feel free to ask any other questions that may come up for you and your husband.

    Chuck
  • NADI
    NADI Member Posts: 2
    #3
    Oscar0914 said:

    CML Info
    Hi Nadi,

    There are a lot of people who have been on Gleevec for many many years. I personal know several people who have been on it for over 8 years now. I was only on it for about 10 months and had to switch to Sprycel due to side effects. I was on Sprycel for about 6 months and I was once again switched to Tasigna (Nilotinib). I have been on Tasigna for almost 3 and 1/2 years now. I have been PCRU (in a molecular remission) for over 3 years now as well.

    I can read the concern in your voice. It is quite common to feel like your husband is the only one out there with this rare form of Leukemia, he is not. I am going to give you the names of a couple of good websites you can go to, they are discussion boards where you can post questions or comments and read what other people in the same situation have already dealt with.

    http://www.newcmldrug.com/amn_Discuss/default.asp

    http://health.groups.yahoo.com/group/cml2/

    Here are some other really helpful websites you should check out.

    http://www.nationalcmlsociety.org/

    http://community.lls.org/blogs/lls/2009/08/24/new-online-chat-for-chronic-myelogenous-leukemia-patients

    http://www.lls.org/diseaseinformation/leukemia/chronicmyeloidleukemia/

    http://www.cancer.org/Cancer/Leukemia-ChronicMyeloidCML/index

    I hope this helps, feel free to ask any other questions that may come up for you and your husband.

    Chuck

    CML
    Thank you Chuck

    My Husband has been on Gleevec since December when he was diagnosed, but apparently it is not working for him because his platelet count keeps dropping so the Dr switch his meds to Tasigna.. he should start taking it today. How are the side effects with you. Just reading about the side effects scares me. Do you work and have normal days? I have so many questions. My husband and I don't talk about it.. when I ask questions he asks me if I am expect him to die soon, so I try to leave him alone.

    Thanks
    Nadi
  • Oscar0914
    Oscar0914 Member Posts: 32
    #4
    NADI said:

    CML
    Thank you Chuck

    My Husband has been on Gleevec since December when he was diagnosed, but apparently it is not working for him because his platelet count keeps dropping so the Dr switch his meds to Tasigna.. he should start taking it today. How are the side effects with you. Just reading about the side effects scares me. Do you work and have normal days? I have so many questions. My husband and I don't talk about it.. when I ask questions he asks me if I am expect him to die soon, so I try to leave him alone.

    Thanks
    Nadi

    Side Effects
    Hadi,
    Side effects can vary greatly between people so tell your husband give the Tasigna time for his body to adjust to it. Personally I have a rash that tends to come and go but doesn't really itch so I don't do anything for it. I do have bone pain in my legs but this can be from the Tasigna or in my case it might be from one of the other meds. I am on. I take a diuretic for elevated spinal fluid pressure I got from Gleevec, Spycel and Tasigna, however leg pain can be a side effect of that medicine so my oncologist and rheumatologist aren't sure which is causing the pain. For now Motrin works for me to help with the pain. I also have some issues with fatigue but if I get plenty of rest I manage quite well. I am self employed and mainly drive for a living.

    When your oncologist put your husband on Tasigna he/she should have given your husband several ecg test to make sure there aren't any problems that are heart related. From what I have been told by my oncologist and what I have read heart problems will tend to show up in the first few days if there is going to be a problem. Do you go with your husband to his doctor appointments? In the beginning it is very helpful for someone to go with him to take notes and ask questions. Have the questions written down ahead of time as everyone tends to forget when you actually have the doctor in front of you.

    In my opinion everyone deals with cancer in there own way. So if your husband doesn't want to talk to you about it maybe you can give him a little time, or find someone else he can talk to. I have got to run this morning.
    Chuck
  • Denise15
    Denise15 Member Posts: 1
    #5
    Oscar0914 said:

    Side Effects
    Hadi,
    Side effects can vary greatly between people so tell your husband give the Tasigna time for his body to adjust to it. Personally I have a rash that tends to come and go but doesn't really itch so I don't do anything for it. I do have bone pain in my legs but this can be from the Tasigna or in my case it might be from one of the other meds. I am on. I take a diuretic for elevated spinal fluid pressure I got from Gleevec, Spycel and Tasigna, however leg pain can be a side effect of that medicine so my oncologist and rheumatologist aren't sure which is causing the pain. For now Motrin works for me to help with the pain. I also have some issues with fatigue but if I get plenty of rest I manage quite well. I am self employed and mainly drive for a living.

    When your oncologist put your husband on Tasigna he/she should have given your husband several ecg test to make sure there aren't any problems that are heart related. From what I have been told by my oncologist and what I have read heart problems will tend to show up in the first few days if there is going to be a problem. Do you go with your husband to his doctor appointments? In the beginning it is very helpful for someone to go with him to take notes and ask questions. Have the questions written down ahead of time as everyone tends to forget when you actually have the doctor in front of you.

    In my opinion everyone deals with cancer in there own way. So if your husband doesn't want to talk to you about it maybe you can give him a little time, or find someone else he can talk to. I have got to run this morning.
    Chuck

    CML
    I found out that I have CML in April of 2011 & I was put on Gleevec. I was wanting to know if a person decides not to take any medication, how long is the prognosis for CML found in the Chronic Stage?
  • Oscar0914
    Oscar0914 Member Posts: 32
    #6
    Denise15 said:

    CML
    I found out that I have CML in April of 2011 & I was put on Gleevec. I was wanting to know if a person decides not to take any medication, how long is the prognosis for CML found in the Chronic Stage?

    CML
    Denise,
    Why would you not want to go on any CML medications? Are you planing on having a Stem Cell Transplant? From what I have read the prognosis isn't very good at all if you choose not to take any medication for CML. Can I ask how old you are?
    Chuck
  • Ladymonk
    Ladymonk Member Posts: 13 Member
    #7
    CML survivors
    Years ago, there were no drugs to deal with this one, so you are blessed that things have progressed. And are continuing to do so every day. In 1998 my neighbor had a very aggressively moving CML, and within 5 months of diagnosis had a donor marrow transplant at Brigham & Womens Hosp in Boston. He has been without any recurrence since then.

    A fellow nurse has had it now for about 7 years and continues to be managed with meds. She knows that some day she may need a transplant, but she is still working, raising a family, and living every day fully.

    Make sure your guy is treated at a center which specializes in this type of cancer, and keep trying. There IS hope!
  • jko1814
    jko1814 Member Posts: 6
    #8
    I have beenon Gleevec for 2
    I have beenon Gleevec for 2 months & have horrible nausea that is not working with nausea meds...the gleevec worked right away on my white count.........very tired and weak otherwise and lost 15 lb. in a month

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