Advice for a friend

karen0423
karen0423 Member Posts: 67
edited March 2014 in Multiple Myeloma #1
Hi- I have a friend who was dx with Multiple Myeloma about a year ago. The Dr. say that it is "smoldering" but will eventually be full blown. What does this mean? Months, years...I am trying to gather as much info as I can in order to be of help. So anything you can share with me is greatly appreciated!! Thank you!

Comments

  • karen0423
    karen0423 Member Posts: 67
    #2
    Hi- I just wanted to re-post
    Hi- I just wanted to re-post to see if anyone can help me out. Thanks
  • karen0423
    karen0423 Member Posts: 67
    #3
    Hi- I am surprised that this
    Hi- I am surprised that this board is so quiet, I am a breast cancer patient and have been on that board and had a lot of activity so am shocked that I have not heard from anyone. Trying to help a friend, sorry your group can't offer help, wishing you all the best.
  • karen0423
    karen0423 Member Posts: 67
    #4
    karen0423 said:

    Hi- I am surprised that this
    Hi- I am surprised that this board is so quiet, I am a breast cancer patient and have been on that board and had a lot of activity so am shocked that I have not heard from anyone. Trying to help a friend, sorry your group can't offer help, wishing you all the best.

    I have to say that I am
    I have to say that I am really disappointed that noone has responded to this thread. I have had luck on the other boards for my cancer and figured I could help out a friend with her cancer. I have provided alternate on-line support groups for her. I hope that you are all doing well.
  • bonnieb299
    bonnieb299 Member Posts: 1
    #5
    karen0423 said:

    I have to say that I am
    I have to say that I am really disappointed that noone has responded to this thread. I have had luck on the other boards for my cancer and figured I could help out a friend with her cancer. I have provided alternate on-line support groups for her. I hope that you are all doing well.

    advice for a friend
    My mother was diagnosed with smoldering myeloma in Sept. 09. On Jan. 12, she called me crying with back pain. She had lesions in 5 vertebrate and 2 of them had fractures. We had no idea it could get so bad this fast. Have your friend make sure they keep a close eye on it. My mother's back was found with an MRI that was ordered from the emergency room we took her to.
  • karen0423
    karen0423 Member Posts: 67
    #6
    bonnieb299 said:

    advice for a friend
    My mother was diagnosed with smoldering myeloma in Sept. 09. On Jan. 12, she called me crying with back pain. She had lesions in 5 vertebrate and 2 of them had fractures. We had no idea it could get so bad this fast. Have your friend make sure they keep a close eye on it. My mother's back was found with an MRI that was ordered from the emergency room we took her to.

    Hi, I am sorry to hear about
    Hi, I am sorry to hear about your mom, I hope that they have started treatment and that she is doing okay. I know that my friend is checked frequently but I will pass this information along. I will keep you and your mom in my thoughts and prayers.
  • WHW
    WHW Member Posts: 189
    #7
    This may help you
    Karen,

    My wife is a MM survivor at present. She was diagnosed in November of 2005. She has had a stem cell transplant and all of the associated maintenance chemo and radiation therapies.

    I am on this board because I was diagnosed with Prostate Cancer this year. Whenever I go online I check both cancers to see if I might be of help to someone just like you.

    Go to Myeloma.org. They are by far and away the best place to find answers in the country. My wife talks with them regularly and has participated in many of their roundtable discussion groups. In fact right now she is driving down to Palm Beach, Florida for a big Myeloma conference this weekend.

    Call the help desk at myeloma.org and ask for Nancy Baxter. She has been by our side for the last 4 years and answered many questions for us. Mention our names Sonny and Lynn Wolfe. Also my wife updates her on our progress and battles so that she has additional information for her data base of answers.

    They are a god-send. Give them a try, that's what they are there for.

    Good luck and bless you for being such a good friend.

    If you need any other info, just ask me, I will check back from time to time.

    Sonny
  • karen0423
    karen0423 Member Posts: 67
    #8
    WHW said:

    This may help you
    Karen,

    My wife is a MM survivor at present. She was diagnosed in November of 2005. She has had a stem cell transplant and all of the associated maintenance chemo and radiation therapies.

    I am on this board because I was diagnosed with Prostate Cancer this year. Whenever I go online I check both cancers to see if I might be of help to someone just like you.

    Go to Myeloma.org. They are by far and away the best place to find answers in the country. My wife talks with them regularly and has participated in many of their roundtable discussion groups. In fact right now she is driving down to Palm Beach, Florida for a big Myeloma conference this weekend.

    Call the help desk at myeloma.org and ask for Nancy Baxter. She has been by our side for the last 4 years and answered many questions for us. Mention our names Sonny and Lynn Wolfe. Also my wife updates her on our progress and battles so that she has additional information for her data base of answers.

    They are a god-send. Give them a try, that's what they are there for.

    Good luck and bless you for being such a good friend.

    If you need any other info, just ask me, I will check back from time to time.

    Sonny

    Sonny,thank you for your
    Sonny,thank you for your response. Sorry to hear that your wife has Multiple Myeloma, I hope she is doing okay. And also sorry to hear of your dx with Prostate Cancer. I myself am a 7 1/2 year survivor of breast cancer, was dx when I was 35 - Stage III so I am on these boards a lot as well.

    I will pass along your information to my friend. I really appreciate it and I know my friend will as well. I wish you and your wife well.


    Thank you again!!

    Karen
  • meloasia
    meloasia Member Posts: 11
    #9
    karen0423 said:

    Sonny,thank you for your
    Sonny,thank you for your response. Sorry to hear that your wife has Multiple Myeloma, I hope she is doing okay. And also sorry to hear of your dx with Prostate Cancer. I myself am a 7 1/2 year survivor of breast cancer, was dx when I was 35 - Stage III so I am on these boards a lot as well.

    I will pass along your information to my friend. I really appreciate it and I know my friend will as well. I wish you and your wife well.


    Thank you again!!

    Karen

    smoldering mm, mgus
    Dear Karen,
    My husband has MM stage 1 when he was diagnosed.
    I did a lot of research on the subject.
    Generally, the consensus is keep an eye out for things to change.
    It could become MM or it could stay is "MGUS" stage for life.
    Regular blood test to check for IgA, IgG , and IgM .
    Also someone has suggested to you to check out the various organization online which have very informative information.

    So your friend should stay calm, think positive, don't stress out, meditate.
    Meanwhile doing semi annual check on his blood, and keep a record.

    keep welll,
    Melo
  • Rory1987
    Rory1987 Member Posts: 120
    #10
    Smoldering
    I've read from somewhere that the rate of progression to MM decreases every 5 years.
  • positivewife
    positivewife Member Posts: 21
    #11
    My sister
    Hi
    My sister has Smoldering Multiple myeloma . I was wondering how your friend is doing and if she is having treatment?
    Jan

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