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Viewing 14 posts - 1 through 14 (of 14 total)
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  • #67407
    Carrie Lynch
    Participant

    Please help. I am a 50 year old female and was just diagnosed with MDS. I am in early stage. My doctor is not treating it yet is this normal? My neutrophils are low along with my white blood cells. I am tired, get night sweats, and am losing weight. I would appreciate any advice, I am a teacher and coach 2 sport seasons. I am not ready to retire I am shocked and scared.

    #67408
    Marie Yeager
    Participant

    Hi Carrie,
    Some versions of MDS are not nearly as aggressive as others. Do you know your karyotype and any other mutations? How is your hemoglobin? My husband has had low risk MDS for 4 years and is currently not receiving treatment because he is stable. It is honestly all about which karyotype you have… some are quite aggressive while others can remain stable for many years. One major suggestion I will make to you – go to a center of excellence. Local hematologists are not nearly as dialed in to the best treatments as they are at the major hospitals. we regret not going immediately to Johns Hopkins which is an hour away from us. Could have save ourselves a lot of sleepless nights and heartache. We transferred his care there 6 months ago and it has been a Godsend for both of our mental health. There are some great groups on Facebook that are very active as well.
    Sending you a virtual hug,
    Marie

    #67410
    jebs554
    Participant

    Hello Marie,

    Just been diagnosed recently, but I don’t know details of my case. I suspect it’s MDS-MLD in early stage. Only BMB result, cytogenetics test was not done. My recent CBC:

    Hemoglobin – 13g/dl
    Platelet – 146,000
    ANC – 4,500

    Any thoughts?

    #67411
    Janet
    Participant

    Carrie:

    I know you are shocked and afraid. I too was somewhat shell shocked when I first heard my diagnosis last year. I also had low neutrophils and white blood cells. I was on the “Wait and Watch” protocol initially, which causes you to feel your life is standing still. Have the Dr’s told you what type of MDS you have yet? Did your Oncologist/Hematologist tell you whether Myeloblasts are elevated? Fatigue is a common symptom. When my red blood cells were slightly low, a couple of Docs discredited the symptom saying it was likely stress. Night sweats can be a symptom is menopause. The loss of weight is not good no matter what the cause. Please update with more info when you have the time.

    #67419
    jebs554
    Participant

    What subtype is that of your husband?
    Thanks.

    James

    #67437
    Carrie Lynch
    Participant

    Thank you so much for answering. I am not exactly sure what I am looking at but the report said I had normal female karyotype. I remember my doctor said waiting for mutations so I guess that means no mutations. My hemoglobin is 12.9. Myeloblast is 1%. The report said granulocytes with mild abnormal maturation curve. I am just frustrated the report did not show MDS he had to look at the sample. I thought this disease was mostly in males. I am just really angry and shocked at this whole situation. Why don’t they treat this at the early stage?

    #67438
    Carrie Lynch
    Participant

    Thank you for your response. It all started with my regular bloodwork and then I was recommended to a Hematologist/Oncologist. They first diagnosed with neutropenia. I thought based on my last appointment I would be referred to a Rheumatologist. I am still shocked. I don’t understand wait and see. My neutrophils are 23.8 and keep dropping. White blood cells 1.81. The doctor said not to be around a lot of people. I am a high school teacher and coach this is pretty much impossible. I am still lifting weights but feel slightly weaker sometimes. Since December I lost 10 lbs and have not had much of an appetite. I have actually felt not great since August finally did blood work in April because I have a busy schedule. I really thought all of this was related to menopause and not having a diagnosis of MDS.

    #67440
    jebs554
    Participant

    Hello Carrie,

    What is your platelets count?

    #67441
    Carrie Lynch
    Participant

    Platelets count 229.

    #67443
    jebs554
    Participant

    Carrie,

    Ok..at least your platelets is normal.
    Did your hamatologist mention the subtype of your MDS?

    Tnx

    #67452
    Carrie Lynch
    Participant

    I am not sure. I tried taking notes but my head was spinning and I was trying to put on a strong face. I am not sure if this makes sense. Just white blood cell maybe that means single. My neutrophils are bad also. I just keep rapidly losing weight I am down to 123 lbs. I have been more tired than normal but I thought I was the fact I am in menopause, turned 50, teach in a high school, and coach in the fall and winter season. I am really hoping I can keep this at bay for as long as possible. I love my students and athletes. Any tips would be appreciated.

    #67537
    Janet
    Participant

    Carrie: When your Dr. Gets the Genetics back (still waiting for mutations) he will tell you what sub-type you have.

    #67538
    Carrie Lynch
    Participant

    I hope I am giving the right information. My oncologist said MDS with excess blasts. I believe single lineage. I don’t understand how this could happen.

    #67540
    Amy Clark
    Participant

    Carrie, we share your pain. My husband was dx with MDS when he was 52 and still training for Ironman competitions. He was very healthy. It can just happen, or maybe you have an unknown familial disposition, like a “probable gremline (passed down genetically) mutation” as what seems to be the case for my husband. The only cancer on either side of his family is one uncle who died young of AML and another on the other side who died in his 80’s last year of myelofibrosis. Drs. don’t treat MDS when it is in a Low Risk stage because the treatment can be worse than the disease and are often not effective in the end. But they are actively researching and may have something out there I am not aware of. Since there is no cure but a stem cell transplant, again, which can be worse than the disease unless you are one of the lucky ones who has success and no long term side effects from that, Low Risk disease if often “treated” wit active observation or watch and wait. Spend a little time in shock and sadness, you are human and this is tough. Then gather the info you can to make good next decisions. Definitely go to a CoE for a second opinion. This MDS Foundation can help secure an appointment there. The CoE will likely want another bone marrow biopsy (ask for scheduled sedation), but the CoE sees many more people with MDS and may have clinical trials if you are interested in that. And ask questions on the forum. You are not alone, but MDS does stink. Call me if we can help share info or stories, or just listen. Amy (53) and Richard (58) Clark 832-540-4214. PS: You will want to know your actual blast number, genetic mutations, karotype (yours is normal), and the lineages that are dysplastic, as well as you hgb (hemoglobin), anc, and platelets, when at the doctor’s office.

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