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Thread: Age 20 with CLL

  1. #1

    Age 20 with CLL


    I'm brand new to these forums, but I've been looking for some information or shared experiences.

    My younger sister, whom I love very dearly, has recently been diagnosed with Chronic Lymphocytic Leukemia, at the rare age of 20. She is symptomatic (muscle weakness, great fatigue, pinprick bleeding and bruising) but still in the 'watch and wait' phase. The doctors say that the leukemia isn't severe enough to begin treatment, but I am obviously concerned due to the rarity of her case. She first went to a doctor about a year ago, who diagnosed her with 'some sort of autoimmune disorder.' She was misdiagnosed as having Lyme's disease, and then subcutaneous Lupus, until the bleeding symptoms surfaced and she returned this year. I know that in acute cases, the progression is more rapid, however as I said, I'm still very concerned for her--her doctor told her it was possible (as in, there have been cases in middle-aged persons with CLL where) a patient could live for 30 years or more on oral chemotherapy alone...as much as I want her to be optimistic (and she is), is this a realistic prognosis? She is very healthy otherwise--works out, eats well and is tiny in size (her doctor is having her gain 10 lbs so that she is not at risk of becoming underweight).

    Is anyone here, or does anyone know someone who has been diagnosed with CLL at such a young age? Were there specific complications related to the rarity of such a case?

  2. #2
    Hi nevermore. I wish you did not have to join the forum but welcome. I a sorry about your sister's CLL. My father had Acute Mylocystic Leukemia so I know a little about leukemias. Even with the Acute form, my father lived several years (at least 2 before being diagnosed and 1 after). I do think it is realistic for you and your sister to hope for 30 years. Nevertheless, as with all of us, you should help her live today as if it was the last day of her life.

    It does not surprise me that it took a long time for them to diagnose her. It took 2 years for them to finally diagnose my father. In the mean time, he went through a lot of tests and treatments for a host of other conditions... including surgery to remove his spleen. Although one of the first things they did was a bone marrow biopsy, the results where inconclusive. So at least in his case it was not a matter of "mis-diagnosis" but more like a diagnosis of exclusion by figuring out what it was NOT.

    You and your sister are in my thoughts and prayers.
    Long-term cancer survivor
    1992 Astrocytoma grade 2, left motor strip
    2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
    My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
    My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
    My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029

  3. #3
    Regular User
    Join Date
    Oct 2009
    sorry to hear about your sister nevermore, i was diagnosed with CML at 22. I was sent home with what i was told the flu. sounds like she's in the watch & wait period. heck yeah 30 years is reasonable i truly believe that attitude and faith are the main taproots of fighting this and of course doctors & medicine. true, most people are middle aged when they are diagnosed and it makes it that much harder to figure out when you are younger. both you guys need to stay strong and trust in god. jim


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