PH+ Chronic Myeloid Leukemia

Country Buff
Country Buff Member Posts: 6
edited March 2014 in Leukemia #1
Recently diagnosed with CML. Am looking for discussions/info/help/advice etc. Very "green" to this cancer issue Happy New Year to all.

Comments

  • jdoug34
    jdoug34 Member Posts: 4
    #2
    PH+ CML
    Hello. Sorry to hear of your diagnosis but there are a lot of us out here and the survival rate is getting better all the time. I am fairly new too (diagnosed December 2008) so I thought I would respond as I clearly recall the first few weeks/months after diagnosis and the questions that went round in my head. Sometimes it can be difficult to ask the doctor and everything that I read seemed to be more confusing. Some articles were very +ve about outcomes and others not so much - all confusing! I assume you are on Glivec treatment? I found the CML Alliance and Novartis websites excellent for up to date info. Any questions you have, post them up and I'm sure you will get responses from those of us who are newbies and also some long term survivors with lots of experience with Glivec or other TKI's.
    Happy New Year to you
    Jeanette
  • Oscar0914
    Oscar0914 Member Posts: 32
    #3
    CML
    Country Buff,
    I was diagnosed with CML Nov. 1st, 2005. I was on Gleevec for 10 months, then Sprycel for 5 months and now I have been on Tasigna for a little over 2 years. My suggestion is always take someone with you to your doctor appointments. It is easy to forget what the doctors tell you or you simply don't hear what they are saying. Write down any questions you can think of and take it with you for your appointments, often your mind goes blank when you are in the office and you can't remember what you wanted to ask. I also would recommend you see a CML specialist as the treatment can be tricky if your oncologist isn't up to date on the current dosage of the drugs and intervals of testing that needs to be done.
    Here are some other great websites for information.

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

    http://www.cancer.org/docroot/CRI/CRI_2x.asp?sitearea=&dt=83

    http://www.newcmldrug.com/

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

    http://www.cmlalliance.com/cml-chronic-myeloid-leukemia.jsp

    I hope this helps, it does get easier and there are new drugs in trial that are looking very promising.

    Chuck
  • Country Buff
    Country Buff Member Posts: 6
    #4
    Oscar0914 said:

    CML
    Country Buff,
    I was diagnosed with CML Nov. 1st, 2005. I was on Gleevec for 10 months, then Sprycel for 5 months and now I have been on Tasigna for a little over 2 years. My suggestion is always take someone with you to your doctor appointments. It is easy to forget what the doctors tell you or you simply don't hear what they are saying. Write down any questions you can think of and take it with you for your appointments, often your mind goes blank when you are in the office and you can't remember what you wanted to ask. I also would recommend you see a CML specialist as the treatment can be tricky if your oncologist isn't up to date on the current dosage of the drugs and intervals of testing that needs to be done.
    Here are some other great websites for information.

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

    http://www.cancer.org/docroot/CRI/CRI_2x.asp?sitearea=&dt=83

    http://www.newcmldrug.com/

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

    http://www.cmlalliance.com/cml-chronic-myeloid-leukemia.jsp

    I hope this helps, it does get easier and there are new drugs in trial that are looking very promising.

    Chuck

    CML
    Thank you for your time and the response. The information is appreciated and will be put to good use.


    Please take a moment and read my note to "jdoug34"


    To you and all other CML'ers, I wish much success with their treatments.


    Happy New Year Chuck


    Country Buff
  • Country Buff
    Country Buff Member Posts: 6
    #5
    Oscar0914 said:

    CML
    Country Buff,
    I was diagnosed with CML Nov. 1st, 2005. I was on Gleevec for 10 months, then Sprycel for 5 months and now I have been on Tasigna for a little over 2 years. My suggestion is always take someone with you to your doctor appointments. It is easy to forget what the doctors tell you or you simply don't hear what they are saying. Write down any questions you can think of and take it with you for your appointments, often your mind goes blank when you are in the office and you can't remember what you wanted to ask. I also would recommend you see a CML specialist as the treatment can be tricky if your oncologist isn't up to date on the current dosage of the drugs and intervals of testing that needs to be done.
    Here are some other great websites for information.

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

    http://www.cancer.org/docroot/CRI/CRI_2x.asp?sitearea=&dt=83

    http://www.newcmldrug.com/

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

    http://www.cmlalliance.com/cml-chronic-myeloid-leukemia.jsp

    I hope this helps, it does get easier and there are new drugs in trial that are looking very promising.

    Chuck

    CML Good Info
    Appreciate all those web sites.

    They have answered many of my questions and given me encouragement. Although there are many questions and much I do not understand, with patience I will learn.

    Very pleased to read so many success stories. Hope your CML story is a success.


    Thanks again for the info


    Country Buff
  • Living N AZ
    Living N AZ Member Posts: 1
    #6
    CML
    Hi, I too was just diagnosed (2/10/10) with CML. Just thru a routine blood test. Due to traveling, I will not start Gleevac till the week of 3/23/10. Have you had any side effects? Are you taking the brand name or a generic (if there is one.) I am having some anxiety about side effects, cure rate and over all daily life issues.

    Help!

    Living N AZ
  • Country Buff
    Country Buff Member Posts: 6
    #7
    Living N AZ said:

    CML
    Hi, I too was just diagnosed (2/10/10) with CML. Just thru a routine blood test. Due to traveling, I will not start Gleevac till the week of 3/23/10. Have you had any side effects? Are you taking the brand name or a generic (if there is one.) I am having some anxiety about side effects, cure rate and over all daily life issues.

    Help!

    Living N AZ

    CML


    Will try to help........First, Cml is not the end.Accept your condition and move forward. There is no time for "Why me?". Here in the U.S. there are over 5000 people diagnosed with CML each year. With the advent of "Gleevec", CML is manageable.

    Encourage you to visit.....www.newcmldrug.com. This site has a wealth of information.

    In answer to your questions, A. There is no Generic available in the states. This medicine is extremely $$$$$$$$. Believe a generic will be available in 1/2 years. B. As for side effects, I am fortunate to not have any negative effects: however, there are some who do have problems with Gleevec. In most cases, the side effects can be managed

    Having absolutely no medical qualifications but from observations of our fellow CML'ers I would suggest you begin Gleevec treatment immediately.


    Think positive and read all you can. In the beginning, it is all so confusing but eventually the pieces all come together.

    We will make it

    Country Buff
  • sponge1949
    sponge1949 Member Posts: 1
    #8
    Country Buff said:

    CML


    Will try to help........First, Cml is not the end.Accept your condition and move forward. There is no time for "Why me?". Here in the U.S. there are over 5000 people diagnosed with CML each year. With the advent of "Gleevec", CML is manageable.

    Encourage you to visit.....www.newcmldrug.com. This site has a wealth of information.

    In answer to your questions, A. There is no Generic available in the states. This medicine is extremely $$$$$$$$. Believe a generic will be available in 1/2 years. B. As for side effects, I am fortunate to not have any negative effects: however, there are some who do have problems with Gleevec. In most cases, the side effects can be managed

    Having absolutely no medical qualifications but from observations of our fellow CML'ers I would suggest you begin Gleevec treatment immediately.


    Think positive and read all you can. In the beginning, it is all so confusing but eventually the pieces all come together.

    We will make it

    Country Buff

    Your Post 2/21/10
    I agree with all that you wrote. A positive attitude is really the best medicine!

    I was diagnosed in March of 2009 and was put on Gleevec immediately. My CML had already progressed and had somehow made a "dog-leg" to become ALL. I was in blast-crisis stage. Gleevec totally eliminated the ALL and started me on the road to a cure. In May 2009 I had a bone marrow transplant and have done very well with only a few stumbles along the way. I give thanks for Gleevec everyday. Because I have the Philadelphia Chromosome, it is literally keeping me alive and basically "cured" of CML.

    Here is to your continued good health.

    sponge1949
  • Country Buff
    Country Buff Member Posts: 6
    #9
    sponge1949 said:

    Your Post 2/21/10
    I agree with all that you wrote. A positive attitude is really the best medicine!

    I was diagnosed in March of 2009 and was put on Gleevec immediately. My CML had already progressed and had somehow made a "dog-leg" to become ALL. I was in blast-crisis stage. Gleevec totally eliminated the ALL and started me on the road to a cure. In May 2009 I had a bone marrow transplant and have done very well with only a few stumbles along the way. I give thanks for Gleevec everyday. Because I have the Philadelphia Chromosome, it is literally keeping me alive and basically "cured" of CML.

    Here is to your continued good health.

    sponge1949

    Your Post 3/18/2010
    In such a brief time period, you've accomplished much. Congratulations with the BMT. It is my understanding that BMTs can be rough...apparently you have"slain the dragon". Good job!

    We are very fortunate that these TKIs (gleevec,sprycel,tasignia) are available. A few years back, the only leukemia treatments were chemo and bone marrow transplants. Neither of which was very successful. The mortality rates were not favorable.

    With a 10 year track record, Gleevec has shown some astounding results.

    May we continue to reap the benefits of this 'miracle drug'.


    Best to our fellow CML'ers.




    Country Buff
  • bklynma
    bklynma Member Posts: 1
    #10
    Country Buff said:

    Your Post 3/18/2010
    In such a brief time period, you've accomplished much. Congratulations with the BMT. It is my understanding that BMTs can be rough...apparently you have"slain the dragon". Good job!

    We are very fortunate that these TKIs (gleevec,sprycel,tasignia) are available. A few years back, the only leukemia treatments were chemo and bone marrow transplants. Neither of which was very successful. The mortality rates were not favorable.

    With a 10 year track record, Gleevec has shown some astounding results.

    May we continue to reap the benefits of this 'miracle drug'.


    Best to our fellow CML'ers.




    Country Buff

    CML
    I was on Gleevec for about a year then it started to effect my liver.After a couple of months I was put on sprycell and have been on it for almost 2 years and I am doing OK. Anyone out there on Sprycell and what can I expect?

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