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Recently diagnosed with MDS-EB-2

Home forums Patient Message Board Recently diagnosed with MDS-EB-2

This topic contains 7 replies, has 3 voices, and was last updated by  tam 1 month, 1 week ago.

Viewing 8 posts - 1 through 8 (of 8 total)
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  • #46449

    JoAnn Nordstrom
    Participant

    My husband (68 years) was diagnosed with MDS-EB-2 in November 2018. He was diagnosed with an abnormality of chromosome 3. He was evaluated to determine if he was a candidate for a bone marrow transplant. Unfortunately due to multiple health issues the doctors say that a transplant is probably not a good idea because his body would not be able to handle the heavy duty chemo required to do the transplant. They fear he would not survive the transplant. With our without the transplant they feel he has about a year to live. I am curious if anybody else has/had a similar situation.

    It just seems confusing that he has been given a short time to live but he feels OK…maybe tired and weak at times. We were told that his condition can quickly and easily change into AML. This is very discomforting and we feel helpless. We wait month to month to see if blood levels change indicating that his MDS is going to AML.

    He has heard that switching to a “Plant Based Diet” has cured cancer so he is working diligently at maintaining this diet in hopes of extending his life. Has anybody heard of an MDS patient who tried this and was successful with it?

    So many questions but will stop here for now.

    #46462

    tam
    Participant

    JoAnn: I have no idea if my diet works, but I do follow a rather strict diet. The diet does not limit my quantity of food, but rather focuses on vegetables, fruits, whole grains, seeds, wild-caught Salmon, lean chicken, beans and legumes. I was diagnosed 5.5 years ago and my numbers have not gone down during that period. In fact, my platelets seem to have gone up which I attribute to organic papaya tea every evening. Let me know if you have questions. If you put “quinoa” in the Search Forum search bar above on the right you will see more detail posted in the second entry down.

    #46463

    JoAnn Nordstrom
    Participant

    Tam, Thank you. That is encouraging. I will check out the post you are referring to.

    #46467

    Rose eden Guanzon
    Participant

    JoAnn my friend’s mom was diagnosed with leukemia almost 20 yrs ago. Unfortunately i had no idea what kind of leukemia as i did not know much about this disease back then. But the bone marrow biopsy accdg to my friend was leukemia. Her mom was sent home by the hospital because they could not do blood transfusions anymore. She has reached her limit. Pls understand this hosp is the best at that time but she lived in the Philippines.So she went home. She did not undergo any other treatment except for blood transfusions. But in the Phils, we have this plant called moringa. She pureed the leaves raw, mixed some honey to make it palatable and she just celebrated her diamond wedding anniversary last year and the leukemia had been in remission for almost 20 yrs. My husband has tried this but it is hard for us to get a steady supply here in the US. Also you need a lot if you want to do what my friend’s mom did. She drank that moringa juice like water. Asian stores sell moringa leaves frozen. Check it out. The internet has a lot of info about moringa. If my husband’s transplant does not take, we plan to go back and try this. But he has a sensitive stomach so we plan to boil the moringa before pureeing it.

    #46468

    Rose eden Guanzon
    Participant

    Also, in the Philippines, papaya leaf juice is encouraged by the Dept of Health as a quick and cheap way to boost platelets when one gets dengue. We just do not know if it will work with mds because the it is the bone marrow itself that has a problem. Just mash some papaya leaves, squeeze through a filter and that’s it. Good luck!

    #46471

    JoAnn Nordstrom
    Participant

    Thank you Rose eden Guanzon. We certainly appreciate the information and something we will check into. Prayers and best wishes for you husband on the transplant. I was told this is a pretty wicked disease so it is scary and worrisome.

    #46475

    JoAnn Nordstrom
    Participant

    Tam. my husband has been diagnosed with high risk MDS. At what level was you MDS when you began your healthy eating?

    #46691

    tam
    Participant

    JoAnn: Sorry I did not get back to you sooner, but I was on vacation for the last month with limited access to the internet. In response to your question, I was diagnosed in September 2013 as having mds unclassified low risk. According to my hematologist/oncologist and mds specialist, my status has not changed. My numbers have been stable and I have not had to take any medication or have any other treatments for the disease. I have a blood test every six months.
    tam

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