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  • My Mom has CLL...

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    Old 06-24-2009, 09:10 AM   #1
    Jamlea23
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    Exclamation My Mom has CLL...

    My mama was diagnosed with Chronic Lymphocytic Leukemia about 8 years ago when she was 40 years old and I was in the 10th grade. She has not had to have any treatment except radiation on a lymph node on her neck one time. They have been watching her wbc and yesterday, they said that it was 123 (normal is 9-11, right?). (She is not really having any other symptoms excpet for fatigue.) I would think that she should start some kind of treatment, but they are saying that they are going to wait about a year. That seems absurd to me. Is this how it usually goes? 123 is really high...


    I am so upset about this today. I struggle with depression anyway, and I can feel it kicking in and I am at work. If something happens to my mom, I will die. I cannot live without her and that is the God's honest truth. I want her to see me get married and have kids. I know that other people live through losing parents but I CAN NOT.


    Do people with CLL live to normal life expectancy sometimes? Is that possible? I mean, isn't it true that people don't die from CLL but from complications as a result of it? So then there should be a pretty good chance that she will be okay for a long time, right?

    Please reply.

     
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    Old 07-18-2009, 05:24 PM   #2
    Suev
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    Re: My Mom has CLL...

    My mom has had
    CLL for 28 years. It has never required any treatment and she is living with this leukemia. She only goes every 3 months for check ups. She has only been in stage l and never goes any further. My mom was 52 when she was diagnosed and she will be 80 in November. I hope this gives you some kind of hope, because my mom does not look her age and she doesn't have an ache or pain.

     
    Old 09-19-2009, 01:47 PM   #3
    susie79925
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    Re: My Mom has CLL...

    Quote:
    Originally Posted by Suev View Post
    My mom has had
    CLL for 28 years. It has never required any treatment and she is living with this leukemia. She only goes every 3 months for check ups. She has only been in stage l and never goes any further. My mom was 52 when she was diagnosed and she will be 80 in November. I hope this gives you some kind of hope, because my mom does not look her age and she doesn't have an ache or pain.

     
    Old 09-19-2009, 01:51 PM   #4
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    Re: My Mom has CLL...

    Hi
    You made my day , I have CLL for almost a year, I am in stage 1, It was a shock to find out I have CLL and there is no chance of a cure. To hear someone is living with this and so many years is wonderful, I found out when I was 58. Is your Mom on a special diet, anything she can tell us to live longer thanks so much Susie

     
    Old 10-17-2009, 12:32 PM   #5
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    Re: My Mom has CLL...

    I was just told I have CLL I'm sitting in a chair afraid to do anything.
    What did she do to live so long with out side effects. Diet, exercise?

     
    Old 10-22-2009, 11:07 AM   #6
    Oleander53
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    Re: My Mom has CLL...

    Can you tell me how you were all diagnoised and what your symtpoms were?

    My boyfriend who is 46 is being worked up for PV or CML or CLL? He has a very high white count, enlarged Spleen and fatigue. He has not had a bone marrow aspiration done yet. He does not have the red face and itching that goes along with the PV........

    Thanks and it is good to read how long people live with this and also feeling good while having it......

    Oleander

     
    Old 01-15-2011, 10:19 PM   #7
    Teener11
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    Re: My Mom has CLL...

    Hi, I'm not even sure if you're still on this medical board, but I just read your post and felt compelled to send you a reply. It'd like to tell you that everything will be fine and that your Mom will be there always. More than that, i would like to be honest and say that CLL can go either way and, regardless, your Mom will need you to be by her side and be strong with her. I have CLL and I have the type that has no known therapy and probably will begin rapid progression within a couple years. I also have a Mom, so I totally know what you're saying and I know I would feel exactly the same. My patents are heartbroken and I feel so bad about how devastating it will be for them when I'm gone. For now we have life to experience together and we have to be present; not looking toward what will be, but directly at what is...otherwise we will not experience what is right in front of us, and we will miss out on both. Find a support group and talk about what your fears and frustrations are... Don't let them keep you down (they will bring you down for sure, but don't let them keep you there!) Good luck!

     
    Old 04-12-2011, 01:58 PM   #8
    weepyone
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    Re: My Mom has CLL...

    Hi
    My mom also has CLL she has been diagnosed since she was 56 she is now 60. she is seen every 6 months for blood tests. She is well in herself she gets hot at night but not night sweats.
    I try not to think or worry about the future i figure i will save my strength for coping if/when anything changes as she is at the watch and wait stasge still.
    hugs to you and your moms

     
    Old 05-11-2011, 02:16 PM   #9
    patronne
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    Re: My Mom has CLL...

    I found that I had CLL through aa routine Blood test but no other symptoms. After 2 years of watch and wait which involved monthly blood tests and visits to see the specialist it was decidid to start treatment in March 2011. The main reaso for the start was due to high white cell count, but it did go up and down but also a scan showed "spots" in my lungs. again no symptoms at all. The treatment knocked me out and I had to go into isolation for a week as the white cell count plumeted to about zero! blood transfusions etc. resolved the problem and now I feel great again. But I am a lot older than your Mum. Have faith that the specialists will do the best they can and tthat it is a slow evolving desease

     
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