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  • Is anyone familiar with Myelodyspastic Syndrome?

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    Old 12-10-2005, 02:20 PM   #1
    jcjwillis
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    Is anyone familiar with Myelodyspastic Syndrome?

    I have been diagnosed with this syndrome I have had it for sometime now. So far the only symptom I have had is anemia. If anyone is familiar with this disorder I would love some advice. Thanks!

     
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    Old 12-10-2005, 03:17 PM   #2
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    Re: Is anyone familiar with Myelodyspastic Syndrome?

    Quote:
    Originally Posted by jcjwillis
    I have been diagnosed with this syndrome I have had it for sometime now. So far the only symptom I have had is anemia. If anyone is familiar with this disorder I would love some advice. Thanks!
    MDS is a disease that afflicts people by failure of the bone marrow to make enough of the white blood cells, red blood cells and platelets. The problem as it progresses is that the platelet counts start to fall very far down. If your normal reading is displayed as 259-300 and suddenly or gradually your platelets fall down in to 1-10 range, you begin to have nose bleeds, gastric area may bleed, intestines may bleed putting the body at more risk of shock and death from infection, heart attack, kidney failure etc. If you are young enough and have a good matching donor the disease progression can be stopped with bone marrow transplant. If the disease is not stopped it can develop what is known as a blast crisis and convert into AML which is a type of leukemia. It is a severe disease when it is active and the cure rate is greatly dependent on the age and other health factors. The older a person is when the disease is recognized 55+ the more difficult it is to deal with due to the body's inability to adapt to illnesses.

     
    Old 12-11-2005, 07:04 AM   #3
    jcjwillis
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    Re: Is anyone familiar with Myelodyspastic Syndrome?

    Thank you so much for your reply to my letter. You seem to have a lot of knowledge when it comes to this disease. Do you yourself have it? or a loved one?
    I am 47 and this diseased was diagnosed when I was about 42. I was told that I was very young to have this problem. If you have any more information on this disease I would love to hear from you.
    Again, Many Thanks!

     
    Old 12-11-2005, 11:46 AM   #4
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    Re: Is anyone familiar with Myelodyspastic Syndrome?

    Quote:
    Originally Posted by jcjwillis
    Thank you so much for your reply to my letter. You seem to have a lot of knowledge when it comes to this disease. Do you yourself have it? or a loved one?
    I am 47 and this diseased was diagnosed when I was about 42. I was told that I was very young to have this problem. If you have any more information on this disease I would love to hear from you.
    Again, Many Thanks!
    That is quite young to be diagnosed, but is good if you can get the prompt treatment. I think that a lot of people go through that stage of MDS on the way to AML and that doctors have recognized the importance of diagnosing it early enough to do something about it. The most important thing to do is to investigate the clinical trials for treatment because they are coming out with new things all the time. The younger you are the more likely you can get a good or permanent remission. I have been told that I could have the disease, but fortunately the platelets counts have remained stable. There is the likelihood that I may never get to the stage that is diagnosable as MDS. That is my hope, but I am also staying aware as well, since I am starting to get into the stage of life where treatment will not be as effective as it could have been. If you have a specific question, I will give you the answer I know, or find multiple answers for you by consulting my resources. I have given you a general description of a very complex disease.

    Last edited by Merimac; 12-11-2005 at 11:48 AM.

     
    Old 12-12-2005, 07:31 AM   #5
    jcjwillis
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    Re: Is anyone familiar with Myelodyspastic Syndrome?

    Thanks for your reply and I am sorry that you are having problems as well.
    I appreciate the information that you have given me thus far, it has helped me greatly.Any other information you might come upon would be greatly appreciated as well.
    Thanks!

     
    Old 02-11-2006, 02:02 PM   #6
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    Re: Is anyone familiar with Myelodyspastic Syndrome?

    Hi,
    I have been researching this disease so much lately. My brother was diagnosed in October. He is 55. From what I have read, it is so much easier to treat when it is diagnosed in a younger person. Unfortunately, my brother is having great difficulties with it. He has been on chemotherapy for the past 4 months. My sister and I were tested as bone marrow donors. My sister did not match but I did - we were so excited then we got the bad news that I was disqualified because of my health. My brother has many other health problems so even though they have now located a non sibling marrow match for him who matches on 5 of the 6 points - they have decided that they will only give him the bone marrow transplant as a last resort. They don't think with his other problems that it will be of any significant help to him. He is holding with the chemo. it is just hard on him. But we have great faith in God and know that He will see him through this. I wish you the best of luck in your dealings with this disease.

     
    Old 02-17-2006, 04:43 PM   #7
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    Re: Is anyone familiar with Myelodyspastic Syndrome?

    My brother got some challenging news yesterday - His MDS is stage 4 - Refractory Anemia with excess blasts in transformation. This type makes it more difficult to treat. Even with a close bone marrow match, since it is not a sibling match and with the type of MDS he has, they are not sure how it will go. They told him yesterday that he can choose to just keep going with the chemo and try and maintain quality of life or he can try the non sibling transplant and hope for the best, the percentage of success with his type is not great. He faces a very difficult battle either way. My heart just hurts for him. I keep praying to God to help him make the right decision and to have peace with that decision.

    It is hard to know that I have what he needs but cannot give it to him because of my health problems.

     
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