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…

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This topic contains 8 replies, has 5 voices, and was last updated by  Shannon C 2 months ago.

Viewing 9 posts - 1 through 9 (of 9 total)
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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 4 months, 2 weeks 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!

    #33631

    Allan Romriell
    Participant

    Shannon,
    Hi, I was diagnosed with MDS in July following a bone marrow biopsy in June. I went in for a physical in april and my dr informed me that my blood work showed my platelets were down to 75,000 so he set me up for an appointment with a hematologist/oncologist. At my meeting with him he told me all my blood counts were low and he couldn’t see any obvious reason for it so wanted me to have a BMB which happened a couple weeks later. I then went back to see him and was told I have MDS, a low risk form called RARS. He also said my blood count numbers were back up to mostly where they should be and we would just monitor me for the time being. I saw him a couple of days ago and numbers were pretty steady, hemoglobin was 11.8 platelets were down some to 117,000 and white blood cells were normal as they had been in july. He seemed happy with these numbers and said he would see me again in October and we will see how my numbers hold. I basically feel pretty good but can tell I don’t have the stamina I had a few months ago. Oh by the way I am a 64 yr old male. I can tell this disease is having some effect on me but grateful that for now no treatment is necessary. I would like to know how your appointment went if you feel like sharing that. I know this really blind sided me as I had no indication I had any problem. I had felt that I seemed to be a little more tired but was chalking that up to getting older, seems things get a lot harder after you turn 60. I certainly hope the best for you.

    #33652

    Mark Simpson
    Participant

    Hi Shannon, I have MDS after a bone marrow biopsy in February of 2017. My surgeon who removed my colon did not like my white blood cell counts in the 1.8 to 2.3 range. Now they are in the 1.3 range and holding steady. Not sure of the the other counts. Had blood poisoning October 2016. I was very lucky. I don’t feel any different. I get tired easily. Good luck. Try a non sugar diet. Hard to do, may work wonders.

    #33662

    Mark Simpson
    Participant

    I looked up my recent blood work, White blood cell count 1.3, red blood cell count 3.84, Hemoglobin 13.2, platelet count 111, Neutrphils .6 or 600. For the last 5 years I kept getting Urinary Tract Infections, which led to blood poisoning October 2016. Doctors had no idea why I kept getting these UTIs. Had my colon removed in March 2017. Don’t feel any different other than I get tired easier. Doctors want to use chemotherapy. Not sure what type. Not to keen of chemo. Any feed back, I would appreciate it.

    Thank you.

    #33666

    Allan Romriell
    Participant

    Mark,
    I was diagnosed in june of this year from BMB. From what I can tell your Hemoglobin is in normal range, platelets are low but not too bad, not sure what white count numbers should be, but I assume yours are low. My last reading my Oncologist said my white cell count was good but didn’t get a number, my platelets were at 117, and my hemoglobin was 11.8. He told me that we would keep watching and has me coming back in oct. He hasn’t mentioned any treatment yet. I hope to hold off any treatment as long as possible as I know once they start chemo with this disease it doesn’t seem to stop. Have they given you a risk factor or told you the specific variety of MDS you have? Mine is RARS and I am at low risk at the moment. I would certainly want to know what chemo treatment they are considering, I don’t know this is all pretty new and scary to me. I wish you all the best and let us know what the Dr says.

    #33734

    Donna
    Participant

    Hi Shannon,
    The hematologist/oncologist has been following my blood work for about 4 years because of low WBC. Finally, they numbers were low, WBC around 1.2 and platelets about 89,000. My RBC and hematocit and hemoglobin were slightly lowered. I had a lot of genetic type blood work and found I have gene mutations that are markers for MDS. The doctor diagnosed me on that basis and talked about starting chemo right away. He wanted to do a bone marrow biopsy to see if this was going to go into AML. I questioned it……I have MDS but you want to find out what stage it is??? Yes. I had the bone marrow biopsy and found I do not have MDS. It may be “evolving into MDS or another form of blood cancer” so I need blood work every 3 months. So, they need to do the BMB to confirm the diagnosis. My WBC is now around 1.8 and my platelets are 80,000. I am going back to the cancer center every 6 weeks now. I can’t help but wonder is someone is missing something. Has anyone else had this experience. Please let us know how you make out on your appointment.

    #33807

    Shannon C
    Participant

    Hello everyone, I just wanted to give a quick update and thank everyone for their replies!

    The results of my bone marrow biopsy were apparently normal, and based on my doctor getting access to 15+ years of my bloodwork, I was diagnosed with something called Cyclic Neutropenia. It’s a relief of course since it’s a mild type, but since I didn’t go through the normal diagnosis process of having my blood drawn several times a week for 6-8 weeks it makes me nervous that something is being missed.

    I’m going to go in for routine bloodwork again in a couple of months, and based on those results I may wind up getting a second opinion. Thank you again for all of the support, and I wish everyone the best of health!

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