CML

janice.copsey
janice.copsey Member Posts: 4
edited March 2014 in Leukemia #1
My brother has recently been diagnosed with CML. He is 46 years old. The doctors want to prescribe Gleevec to treat this.

I know the only cure is a bone marrow transplant and I'm wondering why this has not been presented as an option to him.


1) When did you have the transplant and how are you feeling today
2) Are you still cancer free and how long ago was your transplant
3) Did you receive drugs prior to a transplant
4) Did you have to request a transplant
5) Did you have this done at Fred Hutchinson Cancer Research Centre in Seattle
6) Was it very risky

Needless to say, my brother is very concerned because doctors have given him an average of 7 years to live. We are wondering why they wouldn’t consider a transplant.

Comments

  • Oscar0914
    Oscar0914 Member Posts: 32
    #2
    CML
    Janice,
    I was diagnosed with CML November 2005 when I was 47. I have not had a bmt/sct but there are other options that going this route. One of the most important things for your brother is that he needs to be seen by a CML specialist. CML is a one of the more rare forms of leukemia and many oncologist are not up to date with the current protocols and procedures on how to treat it. For his doctor to tell him the average is 7 years is just plain misleading. I have talked on line with many patients that have been on Gleevec for 7 years or more and are doing fine. Gleevec is a very good drug with being able to keep people in remission for long periods of time. There are also other drugs that are FDA approved for treatment if Gleevec should fail. Sprycel and Tasigna are two of them and there are others that are in trials currently.
    I have been in a molecular remission for over 2 years now. Which means when they look at a million cells they can't detect any CML cells in my blood. When I was first diagnosed I was refereed to a bone marrow transplant doctor just to get the facts and to see if I have any siblings that might be a match for me. From what I have read on line the Fred Hutchinson Cancer Research Centre in Seattle is the absolute best for CML transplants if your brother goes that route. I will list a blog of a woman who has recently gone through the procedure. I also will give you a few great websites for information.

    http://www.leukemia-lymphoma.org/all_page?item_id=8501

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

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

    http://www.caringbridge.org/visit/leamorrison

    I hope this helps,
    Chuck
  • janice.copsey
    janice.copsey Member Posts: 4
    #3
    Oscar0914 said:

    CML
    Janice,
    I was diagnosed with CML November 2005 when I was 47. I have not had a bmt/sct but there are other options that going this route. One of the most important things for your brother is that he needs to be seen by a CML specialist. CML is a one of the more rare forms of leukemia and many oncologist are not up to date with the current protocols and procedures on how to treat it. For his doctor to tell him the average is 7 years is just plain misleading. I have talked on line with many patients that have been on Gleevec for 7 years or more and are doing fine. Gleevec is a very good drug with being able to keep people in remission for long periods of time. There are also other drugs that are FDA approved for treatment if Gleevec should fail. Sprycel and Tasigna are two of them and there are others that are in trials currently.
    I have been in a molecular remission for over 2 years now. Which means when they look at a million cells they can't detect any CML cells in my blood. When I was first diagnosed I was refereed to a bone marrow transplant doctor just to get the facts and to see if I have any siblings that might be a match for me. From what I have read on line the Fred Hutchinson Cancer Research Centre in Seattle is the absolute best for CML transplants if your brother goes that route. I will list a blog of a woman who has recently gone through the procedure. I also will give you a few great websites for information.

    http://www.leukemia-lymphoma.org/all_page?item_id=8501

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

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

    http://www.caringbridge.org/visit/leamorrison

    I hope this helps,
    Chuck

    CML
    Hi Chuck. Right now you are a dream maker for me. I will pass this onto my brother and hopefully there will be some hope.

    I truly hope your cancer goes well and you will live a healthy happy life for many more years.

    I would love to keep in contact.

    Janice

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