Long-term Survivors of low-grade indolent lymphoma (esp. lymphoplasmacytoid lymphoma)

jamadelizmom
jamadelizmom Member Posts: 2
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
I am looking for long-term survivors. I was 29 when I was diagnosed with Stage 4 lymphoplasmacytoid lymphoma. I had an allo transplant in 1997. I have been cancer free since. Is there anyone else out there that has had this particular type of lymphoma?

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #2
    Hello,

    You may want to do a search of the personal web pages. To do this, click on "personal web pages" on the left hand side of this page. You can then enter the search criteria you are looking for. If you find someone you would like to contact, you can do so through the internal CSN email system. You can also contact others that have posted on this board by clicking on the envelope icon below their posting which will send them an email through the CSN internal email system.

    For more information on the CSN internal email system and other CSN features, click on the "help" link at the top of this page.

    Take care,

    Dana
  • 4_gkids
    4_gkids Member Posts: 1
    #3
    survivor of lyphoplasmacytoid lymphoma
    I was diagnosed in 2004 and under went chemo 5days a month for 6 months,have been in remission since...
  • The_Soulful_Octopus
    The_Soulful_Octopus Member Posts: 1
    edited August 2016 #4
    I was dx almost 3 years ago

    I was dx almost 3 years ago with Mantle Cell Lymphoma.  I have not yet needed any treatment and have been seen every 3 months at Dana Farber Boston.  Watching and waiting, thrilled to be healthy but struggling with the stress.

  • po18guy
    po18guy Member Posts: 1,505 Member
    #5
    Waldenström's macroglobulinemia

    ...is the name by which it is also known. Rare, but fortunately it is indolent, allowing time to live and time for new treatments to arrive. 

  • illead
    illead Member Posts: 884 Member
    #6
    The_Soulful_Octopus said:

    I was dx almost 3 years ago

    I was dx almost 3 years ago with Mantle Cell Lymphoma.  I have not yet needed any treatment and have been seen every 3 months at Dana Farber Boston.  Watching and waiting, thrilled to be healthy but struggling with the stress.

    Hi Soulful

    Thinking about you, my husband has MCL, dxed 7/11, relapsed 2/14.  He was put on the target drug Ibrutinib and quickly went back into remission.  He remains on Ib and will for the rest of his life unless something else comes up.  Dr. Michael Wang at MD Anderson is a real pioneer and passionate in research for a cure.  There are some trials going on at MDA which you may be interested in.  You can Google Dr. Wang MCL to find out more about him.  I know the anxiety that you feel, Bill has his 6 mos ct next month and although we don't expect any surprises, it is always nerve wracking.  There is a lot of progress being made with MCL and it is not as ominous as it once was and what the internet may still be saying.  Hang in there and know that there is a lot of hope.  You can read Bill's story by clicking on our picture.  I will be happy to answer any ???? you may have, we have been there.

    My best to you, Becky 

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