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  • my mother has been diagnosed with chronic lymphocytic leukemia what does that mean?

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    Old 11-19-2008, 06:21 AM   #1
    Dayna77
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    my mother has been diagnosed with chronic lymphocytic leukemia what does that mean?

    my mother has been diagnosed with chronic lymphocytic leukemia what does that mean?She is 62 years old.Can they tell how long she has had CLL for? I am so scared and upset.

     
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    Old 11-20-2008, 08:03 AM   #2
    Luckman42
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    Re: my mother has been diagnosed with chronic lymphocytic leukemia what does that mea

    I don't really know if they can tell how long she's had the disease but they can determine to what degree it has progressed. This is called "Staging" and they are 0 thru 5. CLL affects people differently and often times it progresses so slowly that a patient has no need for treatment for many, many years. They can do some amazing things nowadays to treat CLL with Chemotherapy and even bone marrow transplants if need be. I'm into week 2 after my first Chemo treatment and I honestly feel great with no side affects like nausea etc. Tell your mom to listen to her Dr., read up on the disease, and keep smiling! She'll be fine!

     
    Old 11-20-2008, 03:57 PM   #3
    Dayna77
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    Re: my mother has been diagnosed with chronic lymphocytic leukemia what does that mea

    Thank you Luckman42. I wish you all the best.

     
    Old 12-19-2008, 04:52 PM   #4
    jhfreybaby
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    Re: my mother has been diagnosed with chronic lymphocytic leukemia what does that mea

    I too have CLL, I am only 46. I have had it for 4 years now, according to my blood tests. Of all the Leukemia's to have CLL is the best. With all the tests that have been done they say I could have a life span up to 20-30 years. So that is a good thing. Your Mom will more than likely pass from old age with leukemia instead of passing away from Leukemia. I on the other hand will probably pass away because of Leukemia because I am so young to have it. Usually you do not get this type of Leukemia until you are in your 60's - 70's. I wish her good health. Don't stress out about it, or at least try not to.

     
    Old 12-20-2008, 04:33 AM   #5
    jhfreybaby
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    Re: my mother has been diagnosed with chronic lymphocytic leukemia what does that mea

    Thank you for your reply, even though it probably was for the original poster. I do have CLL and I was 42 when I first got it. I am extremely tired but the Doc says it is just stress. I am not stressed because life happens and all I can do is keep my faith in God and get the treatment when I should. some of the Doctors says no treatment until the numbers gets into the 100,000. and I have had two that says I may want to start now. I have to have a bone morrow transplant then Chemo. i have been told if I start too soon the the treatment will not work when it is really needed. I have doctors telling me different things and this is driving me crazy. I should not have to guess when I need treatment, I think this is something the doc should tell me. He said we can start when you want to. Does that make since to anyone?

     
    Old 01-06-2009, 07:29 PM   #6
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    Re: my mother has been diagnosed with chronic lymphocytic leukemia what does that mea

    My boyfriend has CLL, and so I have been reading a lot about it...it can take a long time before treatment is needed. With acute leukemia, it comes on fast, but with chronic leukemia, it can take a long time for symptoms to start. Most people live a long time with this type of cancer, so don't give up hope. Just be supportive, and let her know how much you care about her. That is the best thing you can do. I am still working on that part, my boyfriend is so depressed about his diagnosis, and he thinks he won't be around much longer, and he also has congestive heart failure. It's hard, but we have to be positive and let our loved ones know that they can live a long life and that they have people who care about them.

    Last edited by heatherew; 01-06-2009 at 07:33 PM.

     
    Old 02-13-2009, 01:30 PM   #7
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    Talking Re: my mother has been diagnosed with chronic lymphocytic leukemia what does that mea

    hey...I got diagnosed with CLL 11 years ago an have had chemo twice...I start again in 2 weeks cos its come back an then havin bone marrow transplant in june for a cure so theres lots of help out there! I am 52 years old.
    good luck

     
    Old 02-18-2009, 05:00 AM   #8
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    Re: my mother has been diagnosed with chronic lymphocytic leukemia what does that mea

    Quote:
    Originally Posted by jhfreybaby View Post
    Thank you for your reply, even though it probably was for the original poster. I do have CLL and I was 42 when I first got it. I am extremely tired but the Doc says it is just stress. I am not stressed because life happens and all I can do is keep my faith in God and get the treatment when I should. some of the Doctors says no treatment until the numbers gets into the 100,000. and I have had two that says I may want to start now. I have to have a bone morrow transplant then Chemo. i have been told if I start too soon the the treatment will not work when it is really needed. I have doctors telling me different things and this is driving me crazy. I should not have to guess when I need treatment, I think this is something the doc should tell me. He said we can start when you want to. Does that make since to anyone?

     
    Old 02-18-2009, 05:10 AM   #9
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    Re: my mother has been diagnosed with chronic lymphocytic leukemia what does that mea

    I am 45 y/o diagnosed with CLL in 12/05, and it is uncommon at this age, but you seem to have more information than my doctor is giving me. He is very vague when I ask about what lab values will require treatment. They should not be leaving the decision for when to start treatment up to you though. I would think that they are the experts and they should determine that. I was told it could be 5,10, 20 yrs or never that I require treatment for CLL. My labs fluctuate up and down and it can be very discouraging. I try to keep positive, but sometimes it is very difficult. I also keep faith with God and try to live my life to the full one day at a time.

     
    Old 02-19-2009, 03:59 AM   #10
    loubie lou
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    Re: my mother has been diagnosed with chronic lymphocytic leukemia what does that mea

    Quote:
    Originally Posted by jhfreybaby View Post
    Thank you for your reply, even though it probably was for the original poster. I do have CLL and I was 42 when I first got it. I am extremely tired but the Doc says it is just stress. I am not stressed because life happens and all I can do is keep my faith in God and get the treatment when I should. some of the Doctors says no treatment until the numbers gets into the 100,000. and I have had two that says I may want to start now. I have to have a bone morrow transplant then Chemo. i have been told if I start too soon the the treatment will not work when it is really needed. I have doctors telling me different things and this is driving me crazy. I should not have to guess when I need treatment, I think this is something the doc should tell me. He said we can start when you want to. Does that make since to anyone?

     
    Old 02-19-2009, 04:05 AM   #11
    loubie lou
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    Re: my mother has been diagnosed with chronic lymphocytic leukemia what does that mea

    firstly CLL is known as an older persons leukaemia and often affects people around 65..i was diadnoced when i was 40 and remained well for a while.once my white count cells were elevated i went on Fludarabine in 2005 i had 18 months of remission and it came back... in 2006 i did fludarabine and cyclophosphamide which worked well.
    last nov it came back again and am due to start the same combination theraphy with a new antibody drug called Rotuximab in june/july i am having a bone marrow transplant.
    you have chemo b4 transplant not after!
    let me no how u get on
    loubie lou x
    PS I am a nurse!

     
    Old 03-04-2009, 06:43 PM   #12
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    Re: my mother has been diagnosed with chronic lymphocytic leukemia what does that mea

    My dad was diagnosed when he was 48. He is now 77. He has never been treated. When he was treated by radiation for prostate cancer, his platelets dropped but rebounded after a few months. He finished chemo for bladder cancer, and his numbers really fell. A bone marrow biopsy showed lots of CLL and now we are starting chemo on Monday. Haven't heard yet what therapy the doctor thinks is best. I guess my point is, the disease can just hang out without any problems for years. Dad has felt great. The best thing to do is see your doc as prescribed, and stay away from sick people. If you are in Virginia, I recommend Virginia Oncology. Fantastic docs!!!

    Best of luck to you!

     
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