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 15 posts - 1 through 15 (of 127 total)
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  • in reply to: coping with loss of husband, Ed…one year ago #22227
    lynette
    Member

    Hi Bety
    It does not seem to get any easier. we are coming up on three years since my Mother passed away, and still I have nightmares of the last days I spent in the chair next to her in the hospital. Even the good memories seem too painful at times. You’re in my thoughts. Stay strong. Lynette

    in reply to: Dad with MDS #21125
    lynette
    Member

    Hi Sophia,
    Blasts are immature cells. In Leukemia, there are too many immature cells and not enough funtioning mature cells. Without mature cells the body cannot fight infection, etc. The fact that the blood showed no blasts is good, however that does not mean that there are no blasts in the bone marrow. Before you start induction Chemo–contact a Center of Excellence to get a second opinion. There are several good treatments for the elderly sparing them the traditional Induction chemo. Many experts believe that Induction Chemo should be the last resort for someone over 70.
    Lynette

    in reply to: Ed's lost battle #20718
    lynette
    Member

    Bety,
    I am so sorry to hear of Ed’s passing. You and your family are in my thoughts and prayers.
    Lynette

    in reply to: So sad to hear of Neil's death #20675
    lynette
    Member

    jack–I believe that you are right. He was THE resource for the forum. May it be a small comfort to Neil’s family to know that he touched so many lives.
    Lynette

    in reply to: On This Date…… #20323
    lynette
    Member

    Jim
    The words cured and cancer bring tears to me eyes! It is a blessing!
    Lynette

    in reply to: My Dad #18438
    lynette
    Member

    Dear Katie,
    I am so sorry for your loss. My prayers are with you and your family. You were truly a blessing to your Dad in his final days.
    Lynette

    in reply to: My Dad #18405
    lynette
    Member

    Hi Katie,
    Your Dad’s situation brings back very sad memories of when my Mom was so very ill. She was across the street at NYP. Each day brought something new, and my heart would sink deeper. At times, I would think that I could physically feel it sinking. However, I would not trade being with my Mom during those horrible days and weeks for anything(except a miracle recovery). I know that my presence there was so important to her. Even though she was not always full aware of what was going on–I felt that she knew that I was by her side, and that gave her comfort.
    My prayers are with you and your Dad. Blessings upon you for being a wonderful daughter!
    Take care,
    Lynette

    in reply to: Clorfarabine Clinical Trial Began 1/7 #20009
    lynette
    Member

    Hi Cheryl,
    Dr. Feldman was my Mother’s oncologist. He did everything he could to get her into remission and give her hope. He was always upbeat, and that is exactly what my Mom needed. Good luck!
    Lynette

    in reply to: No Luck At University of Penn #19738
    lynette
    Member

    Cheryl,
    Dr. Feldman was my Mother’s doctor. He was very informative, honest, and he gave her hope. I think that you will like him. Just be prepared to WAIT!!.
    Take care,
    Lynette

    in reply to: No Luck At University of Penn #19736
    lynette
    Member

    Hi Cheryl
    Is Cornell in NYC still doing the Arsenic and ARA-C trial?? My Mother was on that, and she did achieve a remission for about 10 months. Her blasts were up to 39% when she began the trial. She was a young 74, with no other health problems.

    in reply to: My dad lost his fight #19492
    lynette
    Member

    Jennifer
    I am so very sorry. I am shocked, we just spoke on Tuesday. I am glad that you had that special lunch with him. Please call me if I can be of ANY help.
    With love and prayers,
    Lynette

    in reply to: Arsenic Trioxide #19405
    lynette
    Member

    Hi,
    My Mom was on an arsenic and Ara-C protocol. she achieved a remission, and she was in remission for 6 months. Side effects were minimal–numbness in her feet.
    I wish the best for your Dad.
    Lynette

    in reply to: My Brave Man is now at Peace #19219
    lynette
    Member

    Terri,
    I am so very sorry to hear about Bob. He was an inspiration to my Mom who was also originally diagnosed with RAEB-T. May he rest in peace, and may God give you comfort.
    Lynette

    in reply to: Newbee-Father just diagnosed with MDS #18722
    lynette
    Member

    Hi David,
    My Mother was on Revlimid for a few cycles last year. She only had Medicare, parts B and D. Since Revlimid is FDA approved, and “on the market”, it would not be given in the Oncologist’s office. Medicare D would pay only after she met an initial deductible. the cost would be decreased considerably, but still expensive to a Senior on a fixed income. The Oncologist’s office manager was in contact with the manufacturer of Revlimid. They dealt directly w/ medicare.
    Good luck, it took my Mother over 3 weeks between the time the drug was ordered to the time she took her first pill! It was very frustrating!
    Lynette

    in reply to: Bmp results and Treatment #18671
    lynette
    Member

    Abe,
    I believe that the medication is absorbed better in the abdomen. However, Eve is correct, most patients report less pain in that area.
    Good luck!
    Lynette

Viewing 15 posts - 1 through 15 (of 127 total)

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