For those of you with Leukemia

claire1201
claire1201 Member Posts: 15
edited March 21 in Leukemia #1

I just wanted to survey and find out how old you all were at diagnosis and what were your labs like? WBC? neutrophils? anything else abnormal? I don't really have any symptoms but I am seeing a hematologist/oncologist at the moment and recently had some elveated labs which is unusual for me as I never get sick, not even a cold. I feel great right now. My doctor is running a blood smear and other tests on the labs that were drawn on tuesday. I'd just like to see where my labs compare to others. Wishing you all the best!!

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Comments

  • petebeth
    petebeth Member Posts: 3 Member
    #2
    I'm right along with you.

    I'm right along with you. Diagnosed about a month ago  with CLL, stage 0. 72 years old dad of 24 year old twins. Have WBC of about 22,000. All other blood markers good. No other symptoms. Wait and watch stage.

  • claire1201
    claire1201 Member Posts: 15
    #3
    petebeth said:

    I'm right along with you.

    I'm right along with you. Diagnosed about a month ago  with CLL, stage 0. 72 years old dad of 24 year old twins. Have WBC of about 22,000. All other blood markers good. No other symptoms. Wait and watch stage.

    If you don't mind my asking

    what led to you finding out your diagnosis??

  • petebeth
    petebeth Member Posts: 3 Member
    #4
    Just went to my internist for

    Just went to my internist for my usual semi-annual check-up. Blood work came back out of whack_ he had me come back the next day to retest to make sure it wasn't a false read. Had me into the hemotologist 3 days later. Ran new tests and diagnosed CLL stage 0 then with a confirm 2-3 days later after some outside lab results came back. WBC about 22,000. Referred me to this website and told me that I would learn everything I wanted to know _ AND in layman's language. He was quite accrate. Feeling pretty upbeat. Best wishes on your lab work.

  • kboyer3
    kboyer3 Member Posts: 3
    #5
    Waiting... impatiently

    My husband (44) was just diagnosed with acute phenotypic leukemia on Monday. We are waiting on lab results still because they sent them to be done. At first they thought he had a heart condition which freaked me out, but after the labs for the cath came back they went right to bone marrow biopsy, and a week ago we were told it was leukemia, but not "regular" leuekiam. Acute leukemia with both types of blasts being present in his blood. His red blood cell count and his white blood cell count are very low. He's home now, but hopefully they will start some type of treatment this week. We are meeting with doctors tomorrow. We have five kids at home still (six all together) and to say I'm terrified would be an understatement.  I guess since he had both types of blasts they had to do more testing.  I feel like it's taking forever and the wait is stressing me out.  I don't like no knowing what is going on or what to expect. My prayers are with you. 

  • Neenie1961
    Neenie1961 Member Posts: 2
    edited September 2016 #6
    What happened?

    Did you ever get a diagnosis?

    I don't recall my numbers (it was 3 years ago) but I was 52 when diagnosed with AML. In remission now for over 2 years.

  • SA080726
    SA080726 Member Posts: 1
    edited October 2017 #7
    kboyer3 said:

    Waiting... impatiently

    My husband (44) was just diagnosed with acute phenotypic leukemia on Monday. We are waiting on lab results still because they sent them to be done. At first they thought he had a heart condition which freaked me out, but after the labs for the cath came back they went right to bone marrow biopsy, and a week ago we were told it was leukemia, but not "regular" leuekiam. Acute leukemia with both types of blasts being present in his blood. His red blood cell count and his white blood cell count are very low. He's home now, but hopefully they will start some type of treatment this week. We are meeting with doctors tomorrow. We have five kids at home still (six all together) and to say I'm terrified would be an understatement.  I guess since he had both types of blasts they had to do more testing.  I feel like it's taking forever and the wait is stressing me out.  I don't like no knowing what is going on or what to expect. My prayers are with you. 

    How is your husband?

    how is your husband doing now? I am 27 and was diagnosed with the same type of leukemia May 2017. There are not many people diagnosed wi this type and was wondering how he was doing? 

  • Watersprite3
    Watersprite3 Member Posts: 31
    #8
    I was just diagnosed with CML

    I was just diagnosed with CML and started on Gleevec 400 mg yesterday.  I was recovering from treatment for colon cancer and in the middle of my quarterly checkups when we noticed that my white count had elevated to 15,000.  I saw him again in June and it had doubled.  Then I lost my job and changed insurance and oncologists.  The new one drew blood and found that my WBC was double what it had been in June (72,000).  He got me in for a BMB to verify my diagnosis;  I went back to see him a week later and it was official.  He put me on the Gleevec and like I said, I have just started that.  I am in the Chronic stage so we are hopeful that this will work.

    Eileen 

  • Cjk8256
    Cjk8256 Member Posts: 2
    #9
    new diagnoses CLL

    Hello, I was recently diagnosed with CLL. my wbc’s Were 16 or so las year and this year 22-25. Absolute lymphocytes were 11-15 last year and this year 17-23. I’m at the watch and wait stage as well. I did have ct scan with contrast which showed by lymph’s were not enlarged or boggy ( term used by oncologist) bone. marro biopsy was void of two aggressive proteins which mean I do not have an aggressive CLL.  None the less I’m scared. I am tired and my legs ache. I need to get into yoga to regain flexibility. Since my diagnosis two months ago, I’ve made it to work, spent more time with my family, and simply went through the preliminary testing. Last week was wh my oncologist went over my tests and I’ll see him again in three months with new blood work. He told me to contact him before the three month follow up if I have night sweats, become more short of breath, or experience more fatigue. what are your lab result like and how do you feel? Cheryl

  • Tantemay
    Tantemay Member Posts: 2
    #10

    Hello, I decided to finally reach out for some support from other survivors. It’s been hard to find other ALL survivors, but I hope to hear something. I got ALL in July 2012, age 57. Thought I had fibromyalgia, but not so. After a stem cell transplant from related donor in Jan.2013, the ALL returned in July 2017. So, after 2 rounds of Blincyto, in remission, scheduled for another transplant in December from unrelated donor. 

    So, I’m trying to stay positive, w/lots of family & friends support, but I am scared. Anyone out there who has had a 2nd transplant? I m also now ALL Ph +, which I was negative in the first round. 

    Looking forward to hearing from fellow survivor. Thank you,

    May

  • Megsrn7880
    Megsrn7880 Member Posts: 5
    #11
    kboyer3 said:

    Waiting... impatiently

    My husband (44) was just diagnosed with acute phenotypic leukemia on Monday. We are waiting on lab results still because they sent them to be done. At first they thought he had a heart condition which freaked me out, but after the labs for the cath came back they went right to bone marrow biopsy, and a week ago we were told it was leukemia, but not "regular" leuekiam. Acute leukemia with both types of blasts being present in his blood. His red blood cell count and his white blood cell count are very low. He's home now, but hopefully they will start some type of treatment this week. We are meeting with doctors tomorrow. We have five kids at home still (six all together) and to say I'm terrified would be an understatement.  I guess since he had both types of blasts they had to do more testing.  I feel like it's taking forever and the wait is stressing me out.  I don't like no knowing what is going on or what to expect. My prayers are with you. 

    Please update us

    im literally going through EXACT same thing, six kids and all. I really need some words of encouragement from someone who is in the same situation.

  • Megsrn7880
    Megsrn7880 Member Posts: 5
    #12
    SA080726 said:

    How is your husband?

    how is your husband doing now? I am 27 and was diagnosed with the same type of leukemia May 2017. There are not many people diagnosed wi this type and was wondering how he was doing? 

    How are you doing? My husband

    How are you doing? My husband has ALL. 

  • dpeshkin
    dpeshkin Member Posts: 1
    #13
    Megsrn7880 said:

    How are you doing? My husband

    How are you doing? My husband has ALL. 

    I had AML/ALL

    Hi-

    I had an aggressive form of Leukemia in 2016.  Im two years out and dong OK.  I can relate.  three rounds of chemo 1x radiation and a SCT.

  • Lifewithmybabies
    Lifewithmybabies Member Posts: 1
    edited October 2018 #14
    Watersprite3 said:

    I was just diagnosed with CML

    I was just diagnosed with CML and started on Gleevec 400 mg yesterday.  I was recovering from treatment for colon cancer and in the middle of my quarterly checkups when we noticed that my white count had elevated to 15,000.  I saw him again in June and it had doubled.  Then I lost my job and changed insurance and oncologists.  The new one drew blood and found that my WBC was double what it had been in June (72,000).  He got me in for a BMB to verify my diagnosis;  I went back to see him a week later and it was official.  He put me on the Gleevec and like I said, I have just started that.  I am in the Chronic stage so we are hopeful that this will work.

    Eileen 

    How are you doing?

    I've recently been diagnosed with CML, scared to death, reaching out to others to ease my fright, and look for hope... I sincerely hope you are doing well❤️

  • Dottyliz
    Dottyliz Member Posts: 6 Member
    #15
    https://csn.cancer.org/discussion/comment/1606151#Comment_1606151

    what stage are you? I am stage 0. I have intermittent leg weakness and fatigue but i can seem to find a correlation to the CLL diagnosis. I am searching to see if anyone else feels intermitted fatigue (not the normal everyday cancer fatigue) also seem to have an new intolerance to heat.

  • bobbysgirl67
    bobbysgirl67 Member Posts: 1 Member
    #16
    https://csn.cancer.org/discussion/comment/1523321#Comment_1523321

    Im 56 and was diagnosed with CLL about 2 years ago first with countless at 11,ooo then and few months ago 25,000 but now 19,000 so watch and wait as well.

    Go every 3 months for bloodwork and Oncology visit and discuss.

    I've had enlarged lymph Nodes in right groin but gone back down.

  • alongcamemary13
    alongcamemary13 Member Posts: 2 Member
    #17
    https://csn.cancer.org/discussion/comment/1601285#Comment_1601285

    I was just diagnosed with CML started three weeks ago on Sprycel 100mg I had headaches and didn’t feel myself went to ER they told me sinus infections and headaches and “ anxiety “ the forth time I went to different hospital they admitted me ran all kinds of tests and was just diagnosed on 11/28/23 with CML I guess I’m still in shock /denial feel alone sometimes ,overwhelmed and scared because I’m a Mom with a daughter who’s my world .. Mary

  • deville21
    deville21 Member Posts: 3 Member
    #18
    https://csn.cancer.org/discussion/298562/for-those-of-you-with-leukemia
  • deville21
    deville21 Member Posts: 3 Member
    #19

    I was diagnosed in 2018 wbc is at a high at 550,000 been in chemo twice .

  • deville21
    deville21 Member Posts: 3 Member
    #20

    Need to know of any place for lodging as im homelsss any help would be appreciated ty

  • Dottyliz
    Dottyliz Member Posts: 6 Member
    #21
    https://csn.cancer.org/discussion/298562/for-those-of-you-with-leukemia

    Not many updates on this site. Nice to see someone post something. diagnosed last year at age 59. I am at the active surveillance stage. bloodwork every 6 months. did testing that shows I have slow growing CLL but I have been feeling more tired. No other symptoms. WBCs and Lynmphocytes elevated, neutrophils low. RBC/HCT/HGB/PLT all dropping but still Within normal limits. Best of Luck to you.

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