CLL

jpusatari
jpusatari Member Posts: 3
edited March 2014 in Leukemia #1
I still have CLL after chemo, a very small
amount. I am still so tired even though I
have stop my chemo about 6 months ago. I might have caught some thing, or this takes a lot longer then my doctor said
I still have pain even more pain then before
and more tired. I have a hard time getting help from my doctors. Did any one have this problem. or am I the only one.

Comments

  • saved
    saved Member Posts: 2
    #2
    hi, if you have any info on a treatment called chelation please let me know... I have a dear friend who has cll and is treating himself with this and is not getting any better... he has been sick for 2 years. thatnk you for any info you can give me
  • saved
    saved Member Posts: 2
    #3
    hi, if you have any info on a treatment called chelation please let me know... I have a dear friend who has cll and is treating himself with this and is not getting any better... he has been sick for 2 years. thatnk you for any info you can give me
  • jpippi
    jpippi Member Posts: 2
    #4
    Would you mind sharing what kink of pain you are having. When you say you are tired, please describe how you are affected. Do you sleep more, are you unable to do certain daily activites. When you say you still have CLL, how is that determined? Hope you are feeling better soon!
  • vetteworld
    vetteworld Member Posts: 1
    #5
    My dad was recently diagnosed in August with CLL. He has many complications, ones the doctors don't seem to be able to figure out though, because he also has a condition called ITP. Last week alone he lost 50,000 platelets. His doctors told him that his cancer will never be in remission. Do you know anything about this? Also, he is complaining of a lot of joint pain, but his doctor just brushes him off and says that he doesn't know anything about that. When we say he is tired and is in pain, the doctor says he can't figure it out. My dad is only in his 50's and was very active. Doctors' just don't seem to understand. Sometimes we feel like we've hit a wall. They say they don't know why his ITP is so severe -- he's already had a spleenectomy. He is supposedly Stage IV -- swollen lymph nodes... However, he hasn't had chemo since September. He is still having night sweats but his doctor said they aren't going to do anything -- see you in a month. It is such a frustrating process. Do you have any insight from your own experience with the disease?
  • Vince
    Vince Member Posts: 1
    #6
    vetteworld said:

    My dad was recently diagnosed in August with CLL. He has many complications, ones the doctors don't seem to be able to figure out though, because he also has a condition called ITP. Last week alone he lost 50,000 platelets. His doctors told him that his cancer will never be in remission. Do you know anything about this? Also, he is complaining of a lot of joint pain, but his doctor just brushes him off and says that he doesn't know anything about that. When we say he is tired and is in pain, the doctor says he can't figure it out. My dad is only in his 50's and was very active. Doctors' just don't seem to understand. Sometimes we feel like we've hit a wall. They say they don't know why his ITP is so severe -- he's already had a spleenectomy. He is supposedly Stage IV -- swollen lymph nodes... However, he hasn't had chemo since September. He is still having night sweats but his doctor said they aren't going to do anything -- see you in a month. It is such a frustrating process. Do you have any insight from your own experience with the disease?

    Am 55 y/o with CLL, 18 months post chemo with Fludarabine and Rituxan. Also have ITP, but mild and not under treatment for that. Joint pain I believed due to poor oxygen in blood.
  • barry798
    barry798 Member Posts: 1
    #7
    Vince said:

    Am 55 y/o with CLL, 18 months post chemo with Fludarabine and Rituxan. Also have ITP, but mild and not under treatment for that. Joint pain I believed due to poor oxygen in blood.

    Hi Vince:
    I am 62 year old male with CLL. I was diagnosed Feb 5, 2002 and underwent my first chemo - chlorambusil - last September. I developed incredible headaches and the veins in my head were so swollen I thought I would die from some type of anurism (sp?). I was taken from the local hospital to a cancer hospital for one month. In that month anything that could go wrong, went wrong. I developed pneumonia, had such severe headaches that I was given a CT scan, also bone marrow biopsy and developed such a sore throat that I couldn't eat and went 15 days without eating any solid food. Just had all kinds of IV's. Finally, my oxygen level dropped to about 30% and I was transferred to a regular hospital where I had some type of tubing put down my throat and after four days in intensive care unit, woke up back at the cancer clinic with lots of IV's, catheter, etc., etc.
    Built up my strength over the past five or six months by walking two hours a day. However, my most recent check up showed that my WBC level was up and tomorrow I have to start on fludarabine (oral)....I am pretty scared after the chlorambusil. What should I look forward to?
    Sure would apprecite hearing from you.
    Barry
  • lockegram
    lockegram Member Posts: 2
    #8
    I am finished with chemo but am still so weak and no appetite. Have been finished for 8 weeks. Is it normal to be so weak still?
  • gcesar
    gcesar Member Posts: 2
    #9
    Vince said:

    Am 55 y/o with CLL, 18 months post chemo with Fludarabine and Rituxan. Also have ITP, but mild and not under treatment for that. Joint pain I believed due to poor oxygen in blood.

    Hi...my husband starts the same treatment on Monday...how did it go for you?
  • lorean
    lorean Member Posts: 1
    #10
    Vince said:

    Am 55 y/o with CLL, 18 months post chemo with Fludarabine and Rituxan. Also have ITP, but mild and not under treatment for that. Joint pain I believed due to poor oxygen in blood.

    Hi, may I ask you what
    Hi, may I ask you what happens the year treatment starts for Cll. My husband is scared. Will he be very sick? So far he has had nothing but oncologist says soon. then the oncologist says he'll have about a year... any input. To me, the dr is not God but my husband has given up. Thanks

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