Life expectancy of Chronic Lymphocytic Leukemia

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  • Stu45
    Stu45 Member Posts: 4
    I know several people that

    I know several people that see my oncologist who have had CLL for over 20 years

    I have personally not been treated (yet( and am on w&w since 2003---14 years

  • Stu45
    Stu45 Member Posts: 4

    Survival time for CLL

    If I listened to survival times, I would be dead. I was diagnosed with CLL in August 2009. I had Rituxan, then 8 IVIG treatments. In June 2015, my Leukemia transformed into Lymphoma. I had tumers the size of cantelopes in my stomach. I started Rituxan, Bendamustine, and Neulasta treatments in August 2015. I was not expected to survive. I had problems with Bendamustine that most people don't. I was hospitalized 7 times for I nfections. 20 Ococologist I was refered to said I was too sick for treatment, and would not survive. Dr. Jeffrey C. Ward of Swedish Cancer IUnstitute in Edmonds, Washington was not afraid of the long odds. I survived 6 months of chemo. I went into complete remission. I am still standing. Don't lose hope. The scientist are making breakthroughs every day. I, have options if I go out of remissions. There was a time I had no options.

    Cool

    Very uplifting story Dave,

    Very uplifting story Dave, You are one heck of a trooper. the best to you sir !!

  • Stu45
    Stu45 Member Posts: 4
    Kimhice said:

    Hi..I'be just been diagnosed

    Hi..I'be just been diagnosed with Cll stage 0.. that was discovered during a set of routine tests for total knee replacement surgery.  My oncologist said it would be fine to go ahead with the surgery. I work full time in a factory.. and also run a farm ( complete with getting my **** bucked off by a fat Paint Horse!). So, it is possible to continue to work full time? And, can you carry on with your other normal activities? 

    You can carry on plenty of

    You can carry on plenty of normal activities in your situation

    Just dont over do it, and you can be fine for a very very long time

  • Stu45
    Stu45 Member Posts: 4
    tedro said:

    question

    hi, i just found this forum. i read most of this thread.

    for the cll people here: is it correct to assume that you all did have bone marrow biopsies, at some point?

    if so, at what point, early, right away...?

     

    thank you

    I have had CLL since 2003 and

    I have had CLL since 2003 and was told from day one I did not need a bone marrow biopsy.

    I still have not had one, If and when I need treatment , I know it would come into play

  • kkhadder
    kkhadder Member Posts: 3
    NJA1963 said:

    CLL

    I found out that I had CLL in Dec.2005 at the age of 42. We watched and waited until Feb 2009. I had 6 Rounds of Chemo 6 weeks apart and lost 18 inches of my colon from complications.I was good  for about a 18 months. I started feeling lumps again and went to see my Doctor.  I started rituxin for 4 weeks in a row on Fridays.Then it came back 3 months later had more teatment. Then 2 more times in six months.Then went in the hospital in July 2012 to have a stem cell transplant.This did not work very well and now I am getting lymphocyte cells to see if that will  get the ball rolling.I can start feeling lumps again and I get cells on Wednesday.If this does not work I need to have another stem cell transplant.It has been a rough road but it will work out.

    newly diagnosed

    Hey I see you got this at a young age too... i am 48 and was diagnosed last week... i dont know what is ahead of me but am in shock

     

  • kkhadder
    kkhadder Member Posts: 3
    Bravemama said:

    I was diagnosed with CLL in

    I was diagnosed with CLL in June this year, I am only 36.  I struggle with this diagnosis for a few reasons.  Less than one year ago my mom passed from pancreatic cancer and she had four other sisters with the same cancer, so I am at a higher risk of developing pancreatic cancer or other cancers.  That fact alone keeps me a bit nervous.  I have been told I will live many years, especially with new treatments coming out.  I pray I live many more years, as my kids are still home and I would love to see them graduate high school, get married and even become a grandma someday.  My oncologist thinks that is totally possilble.  

    48 and just diagnoesed

    i am just starting this journey and they told me i was young.. your much younger and i know your shock. I am scared about secondary cancers too.. my dad died of lung cancer and cancer is in my family .. want to figure out the best diet and lifestyle to fight this.

  • Hunter55
    Hunter55 Member Posts: 3
    edited January 2018 #88
    Living over 20 years

    Iv'e been living for just over 20 years since going through the bone marrow transplant back in 1997. aside from a few minor effects, (dry eye, thyroid issues, and losing some capacity of my lungs things are going well. (Knock on wood). It sure beats the alternative, pushing up daisies. I am thankfull to the Lord my God for answering our prayers and giving me a new outlook on life. Being able to see some of my children being married and having their own families is sure a true blessing. I now have eleven grandchildren and enjoy spending time with them. I am looking forward to retirement soon and hope to share the golden years with them and the rest of my family and friends. Lfe couldn't be better. THANK YOU GOD. It is my belief that the power of prayer works.

  • el pesce
    el pesce Member Posts: 1
    edited January 2018 #89

    Thank you.

    I am 68, still practicing law and enjoy it, ran the NY Marathon 5 years ago, love to fish and have a great family.  Just diagnosed with CLL because I mentioned that I have a "bump" in my neck during an annual physical.  I was diagnosed with low grade CLL and "wait and see" treatment.  Just had my CT on Friday and will see the doctor tomorrow.  I am afraid and I am still in shock.  I an so uninformed about the details and I am looking for a life raft and a source of encouragement.  You are that for me today.  Please let me know how you are doing now.  God Bless you, I really hope you respond with some good news about you.  

     

     

    HI IM PAUL IN NEW MILFORD CT

    HI MONKEY FISH  IM PAUL  IF YOUD LIKE TO TALK IM AT (content removed by CSN moderator)  WE ARE VERY SIMILARILY SITUATED

  • Mistysbud
    Mistysbud Member Posts: 2
    Can anyone tell me what the

    Can anyone tell me what the relationship is between the White Blood cell count and the Lymphocyte count.

    My whites have been stable but my lymphocytes have been climbing???

  • AnimalAdvocate
    AnimalAdvocate Member Posts: 1
    edited February 2018 #91
    Just got my CLL diagnosis 2 hours ago.

    I'm 42. History CAD w/2 MI in my mid 30s. I have several other chronic health problems, so I wasn't surprised to hear it's cancer too! Anyway, my family is a mess, healthy-wise themselves, despite that most of us were at one time in our adult lives, athletes. Me, notasmuch...high school athlete and casual runner as an adult. My weight ballooned from about 160 to 200 in my 30s and I haven't seriously addressed that problem, though I am a very healthy eater. I just overindulge on carbs like whole wheat and rice. Anyway, I started this account so I could meet people I could talk with about my health, CLL, and just life. As long as I remain asymptomatic, I'm going to try to hide my CLL diagnosis from everyone I know. I don't want to be treated differently. And I really don't even want to think about the cancer. I really don't even know what kind of CLL I have. I have to wait  two more weeks to get that information. It'll be nice to have people to share with online. Because my family has been through so much devastation in recent years, I'm not going to throw this on them. At least, I'm hoping that the disease remains "dormant" for many years. Time to go jog a while. Wink

  • howard.eckles42
    howard.eckles42 Member Posts: 2
    edited March 2018 #92
    CLL

    I have found a tool that makes CLL more comfortable. Papaya enzyme reduced my spleen and liver swelling.  The discomfort reduced in a week much to my joy. 5 tabs 4 x day.