Amyloid

elinda
elinda Member Posts: 3
edited March 2014 in Multiple Myeloma #1
Just wanted to let you know that if you received an amyolid diagnosis with or without multiple myeloma that my husband has survived the transplant. I know this is such a rare, rare disease that you maybe searching for info. Be glad to help you if I can.

Comments

  • mygen
    mygen Member Posts: 9
    #2
    HI. MY MOTHER HAS MM AND AMYLOID. SHE HAS RECENTLY HAD PROBLEMS WITH HER LEGS. THEY CALLED IT NUROPOTHY(SP?) CAN YOU LET ME KNOW WHAT THE TRANSPLANT WAS FOR? I WOULD LIKE TO UNDERSTAND MORE OF WHAT SHE HAS BUT SHE KEEPS ME IN THE DARK. SHE WAS DIAGNOSED WITH MM IN 1988 AND AMYLOID A FEW YEARS BACK. THE AMYOLID HAS COMPLETLY SHUT DOWN HER KIDNEYS AND CAUSING OTHER PROBLEMS. THANKS FOR WRITING.
  • elinda
    elinda Member Posts: 3
    #3
    mygen said:

    HI. MY MOTHER HAS MM AND AMYLOID. SHE HAS RECENTLY HAD PROBLEMS WITH HER LEGS. THEY CALLED IT NUROPOTHY(SP?) CAN YOU LET ME KNOW WHAT THE TRANSPLANT WAS FOR? I WOULD LIKE TO UNDERSTAND MORE OF WHAT SHE HAS BUT SHE KEEPS ME IN THE DARK. SHE WAS DIAGNOSED WITH MM IN 1988 AND AMYLOID A FEW YEARS BACK. THE AMYOLID HAS COMPLETLY SHUT DOWN HER KIDNEYS AND CAUSING OTHER PROBLEMS. THANKS FOR WRITING.

    In my husband's case the amyloid was produced by the mm. The mm is slow growing but produces the amyloid protein that attacks major organs like heart, liver and kidneys. The liver becomes swollen and distended making it difficult to eat food and the kidneys begin to fail. When amyloid affects the heart, it inhibits the heart from pumping causing heart failure and shortness of breath. In my husband's case he had all three organs plus affected. The stem cell transplant is when the stem cells from the bone marrow are removed and then you are given chemo. Your stem cells are then transplanted back in your body. This procedure was developed in order to stop the MM. If there is no MM, there is no amyloid being produced. We are almost one year post transplant. My husband's breathing is better and his liver is smaller. His kidney function is OK. He is 42 so he had age on his side for the transplant. He had it done at the Mayo Clinic. The Amyloid can also effect the blood vessels in the body and that could be what your Mom's neuropathy is from. Some of the chemo drugs they use to treat mm can also cause neuropathy. There is also an amyloid discussion section on Yahoo groups. I believe the biggest problem with this disease is diagnosing it. Mayo and Boston are the leading treatment centers at this time and Mayo is quite aggressive in Amyloid treatment.
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #4
    Hi, my husband, age 52 has been diagnosed w/both. He will be going thru the stem cell transplant. Right now he is on 3 courses of dexamethasone and then will rest before starting neupogen shots for stem cell harvesting.

    I'm terrified for him, how is your husband doing? How bad was the transplant procedure? Any information would be so appreciated.

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