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

Posts: 2
Joined: May 2004

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?

Posts: 1560
Joined: May 2006


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Take care,


Posts: 1
Joined: Jan 2010

I was diagnosed in 2004 and under went chemo 5days a month for 6 months,have been in remission since...

Posts: 1
Joined: Aug 2016

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.

illead's picture
Posts: 874
Joined: Aug 2012

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 

po18guy's picture
Posts: 1211
Joined: Nov 2011

...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. 

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