MDS is a bone marrow failure disorder
MDS is a blood cancer
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Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

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Viewing 14 posts - 1 through 14 (of 14 total)
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  • in reply to: Just got diagnosis a few days ago #51676
    justa0
    Participant

    Happy for you. Transplant is good thing. Still praying for you.

    justa0
    Participant

    The spleen has to do with the red blood counts, it was the first thing they checked with Ultrasound. It was okay so I had bone marrow biopsy which showed intermediate MDS. I’m hoping for BMT soon and am also on vidaza. I will add you to my prayers.

    in reply to: LDAC + Daurismo #51028
    justa0
    Participant

    I’m beginning my 4th cycle next week of vidaza. I’m getting BMB next month. I’m hoping for a remission of MDS, either way I plan on BMT soon after the BMB. I can’t imagine 3 years of vidaza cycles. The doctor said I was not close enough to AML to get the venetoclax in addition to the vidaza. I pray we both have blasts less than 5% in bone marrow. BMT is only way to cure the MDS blasts problem. I work for the lord so whatever happens to me concerning this disease and BMT is okay with me. As it is written to live is Christ and to die is gain.

    in reply to: Just got diagnosis a few days ago #51027
    justa0
    Participant

    I’ve been praying for you. I’m very happy to hear you have a girlfriend. I hope your blood counts increase and you get out of their. We both have biopsies soon to see if we are in remission. I’m praying for us both.

    in reply to: MDS-RAEBII -> sAML #50918
    justa0
    Participant

    Wow, my learning curve began last year in November. I couldn’t even say myelodysplastic syndrome for a few days. My watch and wait was six weeks. I’ve had 3 cycles of vidaza, I needed a blood transfusion on the second and third cycle. At 4 cycles I get BMB. I hope I’m in remission. God is good. I know a lot about him, if you want to learn.

    in reply to: Mottled rash all over body #50917
    justa0
    Participant

    I’m very happy you get to speak to a doctor at Stanford. I am praying for you about your condition. This is a great website because it is monitored by caring people.

    in reply to: Just got diagnosis a few days ago #50844
    justa0
    Participant

    Yeah, for you. Hope is good. Love is eternal

    in reply to: Diagnosed 2 years ago #50760
    justa0
    Participant

    If your doctor does not respond to your questions about why your husband is so tired, then I would get a second doctors opinion. I also have anemia. My hemoglobin and red blood counts are very low and it makes me very tired.

    in reply to: Diagnosed 2 years ago #50740
    justa0
    Participant

    What is your husband’s hemoglobin number?

    in reply to: Diagnosed 2 years ago #50697
    justa0
    Participant

    Was your husband diagnosed with anything else besides anemia 2 years ago and are his other blood values tested like WBC, Hgb?

    in reply to: Just got diagnosis a few days ago #50695
    justa0
    Participant

    I am so sorry to hear about your AML. When I said, ‘There is more to this life’, I meant what is inside you. You know eternity exists but you cannot not explain it with anything from this world. Concerning the two options available for defining why we are here, chance creation of the universe or divine creation by design, the choice is available to everyone to decide. I’m 68 years old and have a high risk of AML. I searched for this designer and was found, now I have a hope of eternal life with this creator. Perhaps, speaking with a hospital chaplain would help you. Your hair grows back after chemo. I will keep you my prayers.

    in reply to: Just got diagnosis a few days ago #50541
    justa0
    Participant

    Mark, the odds are a lot better than 50:50 for cure with a bone marrow transplant. You are petty close to having it about right, but you had to have noticed your age and how your flesh was different than when you were 20 years old. There is another part to this life besides running, jumping, and physical exertion. Your interaction with the people around you. The only difference between yesterday and today is the knowledge of your disease. You can redirect your motivation to those around you to give meaning and purpose to your life. All of our lives here on this earth are like vapor from a boiling pot, you see the vapor, then it’s gone. Whether you choose to treat or enjoy your remaining days is your decision. There is something greater than this physical life to pursue. COVID-19 does make life different.

    in reply to: MDS and Covid-19. Getting Vidaza Injections #50480
    justa0
    Participant

    I am sorry to hear about your wife’s condition. I am glad your medical staff are able to adjust the new COVID-19 rules so your wife and you can see each other during your Vidaza treatments. We have to make adjustments almost daily because of this terrible disease. This life passes very quickly and we need to enjoy each moment of every day. Strengthen yourself spiritually whenever you can.

    in reply to: Alcohol and mds #50165
    justa0
    Participant

    MDS changes everything. One’s life is in the blood. I am sorry to hear your partner has been diagnosed. I hope they learn to adjust their life with the diagnosis. It is also difficult to be the observer of someone with the diagnosis. My prayers go out to you and your partner.

Viewing 14 posts - 1 through 14 (of 14 total)

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