MDS is a bone marrow failure disorder

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Meeting with a hematologist/oncologist this week…

HomeForumsPatient Message BoardMeeting with a hematologist/oncologist this week…

This topic contains 2 replies, has 2 voices, and was last updated by  Shannon C 1 week, 5 days ago.

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  • #33469

    Shannon C
    Participant

    Hello everyone,

    This is my first post, and I’m not really sure how to start. I will do my best to give a succinct timeline and be as objective as possible even though I’m freaking out inside.

    I’m a 37 year old mom of two amazing kids, aged 2 and 4. My mother died when she was 45 with AML, and she fought it for 3 years, spending the majority of that time in the hospital. I’ve been a Hospice social worker and volunteer for 10 years now and I have always known that if I were to become sick, I would opt not to fight the way my mother did. I would rather go out peacefully at home with my husband, kids, family, and friends by my side.

    I have been somewhat hypervigilant about my health due to what happened with my mom. She was 37 when she was diagnosed with a thyroid issue, 40 with RA, and 42 with AML. Each year I have blood work done to ensure everything is ok. When my daughter was a few months old my PCP referred me to a hematologist/oncologist because he didn’t like the results of my blood work. The Doctor I saw was horrible and unprofessional, but he was the only one around who took my insurance. After 3 months and 4 rounds of blood work I was told I tested positive for Epstein Bar Virus, and that my fatigue was a result of the virus. He also suggested that I go on birth control (although I had my tubes tied) so that I could stop my monthly periods or have an ablation as to minimize blood loss. 5 failed attempts at finding a good birth control later, I gave up and decided I would just have to deal with the iron loss through Rx vitamins. The oncologist also commented at our last visit that he couldn’t “guarantee” that I wouldn’t have cancer in 5 years?! I requested, but was never made privy to my final lab results.

    Fast forward to February of this year. My PCP is again concerned and says a CBC needs to be repeated in 3-4 months time. I agree and come back to have it done again. This time I’m again referred to a hematologist/oncologist but I also have a diagnosis: neutropenia. Of course I start researching everything I can online and I quickly become terrified. I call my doctor and ask if we can rule out any of the autoimmune disorders, since my mom had RA, and I have maternal aunts with Lupus. She agreed, and ordered the ANA test that checks for 150+ autoimmune disorders. One week later, it comes back negative. When I tried to speak to my doctor again about it over the phone, I was told that I have to make an appointment to come in and see her personally before she will discuss anything else with me, or I need to secure a hematologist/oncology appointment.

    As I said in my title, I’m meeting with one this week. This is a new doctor who appears to have an excellent reputation. Obviously I’m terrified, so this brings me to the reason for my post. I would like to ask the community at large for feedback on the following:

    1) Did you have to have a bone marrow biopsy in order to secure a diagnosis?

    2) What should I expect at my first appointment?

    3) These are my CBC #’s, what do they signal to you?
    Hemoglobin: 11.3
    WBC: 2.5
    Neutrophils: 1300
    Platelets: 145

    Additionally, in the last couple of months I have felt almost always exhausted, I get winded at the slightest amount of effort in an activity, I have full body aches, bruise extremely easily, have a cough that’s lasted more than a month, and in the last few days I’ve developed a sore throat (no one else in my family is experiencing these symptoms).

    I would appreciate anything and everything anyone might have to say, good, bad, or ugly. Helplessness doesn’t suit me, so this is my way of staying proactive.

    Thank you!

    Shannon

    #33472

    David Spicer
    Participant

    Hi Shannon –

    I’m the caregiver of an MDS patient – my husband Alan is a long-term (25-years) HIV survivor who was just diagnosed with MDS in May. We were given the “Building Blocks Of Hope” booklets, available on this website, which were a godsend. The dx was from the first set of bone marrow biopsy results – the number and appearance of various cells in the marrow and surrounding fluid. The second set, involving the number and type of genetic abnormalities, took a couple of weeks more to come back. Those have a large influence on expected outcome.

    Looks like there is a wide range of conditions, causes, and expected outcomes under the umbrella known as MDS. While there isn’t a lot of activity on this message board, the wealth of older messages contains a lot of information and experience… and we never know when someone new will show up 🙂

    With best wishes – Dave

    • This reply was modified 1 week, 6 days ago by  David Spicer.
    #33484

    Shannon C
    Participant

    Hi David,

    Thank you so much for sharing you and Alan’s journey! I’m so happy to hear that he’s lived a fulfilling life and decided to take part in clinical trials, and I only hope they will prolong and enhance the remainder of his years.

    I’ve been browsing some of the posts here, and they all have been so diverse. As you’ve said, there’s no clear pattern. I hope that someone will look at my lab work and give me feedback if it’s compared to what they started off with. I’ve done so much research already, but a real persons perspective vs clinical data might help.

    Thanks again for replying, I’ll post what the outcome of my appointment was soon!

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