Splenic marginal zone lymphoma: Is there... - Lymphoma Canada

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Splenic marginal zone lymphoma

Helgasby profile image
6 Replies

Is there anyone out ther with this lymphoma, or am I the only one in the world with this type?

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Helgasby profile image
Helgasby
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6 Replies
lesleyjehan profile image
lesleyjehan

I was recently diagnosed with Splenomegally Lymphadenopathy I don't know if it's the same thing as you? Also non alcoholic irreversible Liver Cirrhosis

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LCAdminAdministratorLymphoma Canada

Yes, there are others out there with Splenic Marginal Zone Lymphoma although we know why you might feel as though you are the only one out there with it. There might not be anyone in this community with the same lymphoma type but Lymphoma Canada does have a large network online. If you'd like, we can send a message out to our network and ask if someone is willing to speak with you. Please feel free to reach out to us via email info@lymphoma.ca or phone 1.866.659.5556.

sisi70 profile image
sisi70

Hi, I have a Splenic B-cell lymphoma/leukemia unclassifiable. I had a splenectomy the last year (because my spleen was very big). Now, I'm in Watch & Wait.

Andilynn profile image
Andilynn

Hello, I was diagnosed with SMZL in 2014 at age 59. I had 4 weekly infusions if Rituxan followed by two years of maintenance Rituxan therapy. My CT scans and blood work look good. My new oncologist says I am cured. My previous one said there is no cure, but that it's an incurable, but manageable disease. I'm curious what others have been told about SMZL.

skinkade profile image
skinkade in reply toAndilynn

Hi, I too had Splenic marginal zone lymphoma. I understand that it is a chronic disease and will possibly come back on us. I had 9 infusions of Gazyva for my treatments. One doc told me that average was 2.5 years another said it may never come back.I'm hoping for a long remission!

Andilynn profile image
Andilynn

Hi skinkade, There aren't many of us with SMZL. I've never heard of the drug, Gazyva, so I am very interested to hear about it and your experience. Here's hoping for many years in remission for all of us.

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