Splenic marginal zone lymphoma

Posted by SteveSmzl @scsimpson, Sep 13, 2017

I was diagnosed in May with splenic marginal zone lymphoma. For the past 6 years I have been dealing with Itp. Now it turns out that it was smzl.I had my spleen removed in July. Now I am waiting until April to have another bone marrow biopsie to see if the lymphoma in my marrow go down. Does anyone have any advice?

Hello @scsimpson, and thank you for posting your first post.

My knowledge of splenic marginal zone lymphoma is a bit limited, but I am understanding that it is a type of B-cell lymphoma that affects the spleen. We do have some members talking about B-cell lymphoma, and while they may not be in the exact same situation as yourself, they may be able to provide some incite and experiences to share with a bone biopsy and the waiting for results. @ginpene05, you recently mentioned you were diagnosed with Non Hodgkins Lymphoma after a bowel resection recently, do you have anything to share with @scsimpson (If you are replying by email, click VIEW & REPLY so you can see their original post) about having a bone marrow biopsy or any advice on the waiting for answers and diagnosis?

I’d also like to invite @travelgirl to share her thoughts with the waiting for tests as she has follicular lymphoma (another type of B cell lymphoma) and is on a wait and watch approach with her physicians. @jwilson11 has also underwent a bone marrow biopsy for follicular lymphoma and may be able to share their experience with that. Although these are not the exact same lymphomas, they are from the same B cell family and may share some commonalities.

@scsimpson If you don’t mind, and if you are comfortable, would you mind sharing a bit more about yourself and your situation? You mention LTP, could you clarify what that stands for?

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@JustinMcClanahan

Hello @scsimpson, and thank you for posting your first post.

My knowledge of splenic marginal zone lymphoma is a bit limited, but I am understanding that it is a type of B-cell lymphoma that affects the spleen. We do have some members talking about B-cell lymphoma, and while they may not be in the exact same situation as yourself, they may be able to provide some incite and experiences to share with a bone biopsy and the waiting for results. @ginpene05, you recently mentioned you were diagnosed with Non Hodgkins Lymphoma after a bowel resection recently, do you have anything to share with @scsimpson (If you are replying by email, click VIEW & REPLY so you can see their original post) about having a bone marrow biopsy or any advice on the waiting for answers and diagnosis?

I’d also like to invite @travelgirl to share her thoughts with the waiting for tests as she has follicular lymphoma (another type of B cell lymphoma) and is on a wait and watch approach with her physicians. @jwilson11 has also underwent a bone marrow biopsy for follicular lymphoma and may be able to share their experience with that. Although these are not the exact same lymphomas, they are from the same B cell family and may share some commonalities.

@scsimpson If you don’t mind, and if you are comfortable, would you mind sharing a bit more about yourself and your situation? You mention LTP, could you clarify what that stands for?

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I am a 65 year old man. I must have missed typed. It should have read ITP. Idiopathic thrombocytopenic purpura. My main complaint is fatigue. It started to get better a few weeks after my splemnecctomy but now has returned.

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My diagnosis is large B cell and follicular non Hodgkin lymphoma. All I know about waiting for pathology results is that you just have to wait. That gives you time to google it and get your questions ready! I know the waiting is tough, that the I information should be available immediately, but that is that. I have never had a bone marrow test.. Good luck.

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Has this non Hodgkin lymphoma been discussed where it has progressed to the lung area?

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Hello @waltera. You may notice I moved your discussion and combined it with a discussion of the same title. In this discussion, you can read @scsimpson's experience. I'd also like to invite @andilynn, @grand4, @bordercolliecra to this discussion to share their experiences with splenic lymphoma.

@waltera, has your cancer spread to this area or is this something that is suspected?

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@JustinMcClanahan

Hello @waltera. You may notice I moved your discussion and combined it with a discussion of the same title. In this discussion, you can read @scsimpson's experience. I'd also like to invite @andilynn, @grand4, @bordercolliecra to this discussion to share their experiences with splenic lymphoma.

@waltera, has your cancer spread to this area or is this something that is suspected?

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Justin, I think you’re doing a great job. Yes, it has spread to the lung area. I was treated with rituximab but it appears that it has returned based on a PET scan. I have frequent blood work as a monitor. I’m 84 years old and very fortunate I have no symptoms but I’ll probably try some form of treatment again this summer.

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My name is Laurie and I was diagnosed almost 2 years ago with SMZL after routine bloodwork for an ortho procedure. I wasn’t officially diagnosed until after a bone marrow biopsy. I am extremely lucky to have been diagnosed early, and quarterly bloodwork find me remaining pretty stable. I am 64 years old and fairly active.

Has anyone seen or heard about healthy lifestyle models for SMZL patients? There isn’t a lot of research because we’re so rare, but I’d like to be as proactive as possible and find resources on diet, exercise, and mindfulness as it pertains to the immune system. So happy to have found a current group!

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@waltera

Has this non Hodgkin lymphoma been discussed where it has progressed to the lung area?

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My husband has three lung nodules metastized from lymphoma, diagnoses may be splenic marginal zone lymphoma though they are not certain, lung biopsy positive for lymphoma, bone biopsy some large B cells. Haematologist feels some cells indolent some aggressive. Waiting for treatment. Enlarged spleen 24cm., anemia, low red blood cell count. Elevated calcium CRIT twice in two months has had seven blood transfusions so far both CRIT times with added anti-calcium drip.

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@waltera

Has this non Hodgkin lymphoma been discussed where it has progressed to the lung area?

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Yes see juiceylucy.

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