1. < Blood Cancers & Disorders

Want to connect with others with Splenic B cell Marginal Zone Lymphoma

Posted by April @sabtahis, Jul 24, 2016

There are over 80 different subtypes of lymphoma . This is a slow growing lymphoma.I'd like to know and communicate with any patient if possible.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

SteveSmzl | @scsimpson | Sep 14, 2017
In reply to @JustinMcClanahan "Hello @scsimpson, and thank you for posting your first post. My knowledge of splenic marginal zone..." + (show)
@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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ginpene | @ginpene05 | Sep 16, 2017
In reply to @scsimpson "I was diagnosed in May with splenic marginal zone lymphoma. For the past 6 years I..." + (show)
@scsimpson

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?

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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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grand4 | @grand4 | Oct 4, 2018
In reply to @scsimpson "I was diagnosed in May with splenic marginal zone lymphoma. For the past 6 years I..." + (show)
@scsimpson

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?

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Diagnosis of b cell non hodgkins splenic lymphoma . Treatment: 4 weekly treatments of ritixan. Has anyone had their spleen removed when diagnosised?

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6 replies
Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Oct 4, 2018
In reply to @grand4 "Diagnosis of b cell non hodgkins splenic lymphoma . Treatment: 4 weekly treatments of ritixan. Has..." + (show)
@grand4

Diagnosis of b cell non hodgkins splenic lymphoma . Treatment: 4 weekly treatments of ritixan. Has anyone had their spleen removed when diagnosised?

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Hello @grand4. I would like to invite @maisyann, @mepowers, @ladygolfder18, and @dougmann who also have experience taking rituxan (rituximab). @dougmann also has some experience with spleen pain.

@grand4, if you don't mind me sharing, was removing your spleen discussed with you as a potential treatment?

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1 reply
SteveSmzl | @scsimpson | Oct 4, 2018
In reply to @grand4 "Diagnosis of b cell non hodgkins splenic lymphoma . Treatment: 4 weekly treatments of ritixan. Has..." + (show)
@grand4

Diagnosis of b cell non hodgkins splenic lymphoma . Treatment: 4 weekly treatments of ritixan. Has anyone had their spleen removed when diagnosised?

Jump to this post

I was diagnosed with splenic marginal zone small b cell lymphoma in April of 2017. The Doctors at Mayo Rochester removed my enlarged spleen July 2017. In September 2017 I had another bone marrow biopsy and flow cytometry and the lyphoma was still in the bone marrow. In October I started 4 weeks of Rituxan. Had no side effects to the Rituxan. After the Rituxan the lymphoma is now gone but I still have night sweats and fatigue . I am now on wait and watch until the end of January next year.

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grand4 | @grand4 | Oct 5, 2018
In reply to @JustinMcClanahan "Hello @grand4. I would like to invite @maisyann, @mepowers, @ladygolfder18, and @dougmann who also have experience..." + (show)
@JustinMcClanahan

Hello @grand4. I would like to invite @maisyann, @mepowers, @ladygolfder18, and @dougmann who also have experience taking rituxan (rituximab). @dougmann also has some experience with spleen pain.

@grand4, if you don't mind me sharing, was removing your spleen discussed with you as a potential treatment?

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Yes, It was discussed, however the doctor was totally NOT for removal of the spleen.

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bordercolliecra | @bordercolliecra | Oct 31, 2018
In reply to @grand4 "Diagnosis of b cell non hodgkins splenic lymphoma . Treatment: 4 weekly treatments of ritixan. Has..." + (show)
@grand4

Diagnosis of b cell non hodgkins splenic lymphoma . Treatment: 4 weekly treatments of ritixan. Has anyone had their spleen removed when diagnosised?

Jump to this post

I have just been diagnosed with a Splenic cyst and an enlarged spleen and liver. Awaiting results of CT scan next week with interest to see if my Indolent Follicular Lymphoma is back. I was originally diagnosed in August 2000. Relapsed with an extra nodal tumour on my scalp in March 2012.

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caroldk | @caroldk | Feb 13, 2019
In reply to @grand4 "Diagnosis of b cell non hodgkins splenic lymphoma . Treatment: 4 weekly treatments of ritixan. Has..." + (show)
@grand4

Diagnosis of b cell non hodgkins splenic lymphoma . Treatment: 4 weekly treatments of ritixan. Has anyone had their spleen removed when diagnosised?

Jump to this post

I was diagnosed with SMZL in December of 2018. I've had several iron infusions but nothing else. I am starting to have some pain where my spleen is but my biggest problem is hurting all over my body and chronic fatigue. The last week or so I have been running a low grade fever on and off. Does anyone else have those types of symptoms? Since this is so new to me, I'm not sure if it's something else or related to the SMZL. My next visit with my Oncologist is next month and I will talk with him also. Thank you

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Jackie, Alumna Mentor | @travelgirl | Feb 13, 2019
In reply to @grand4 "Diagnosis of b cell non hodgkins splenic lymphoma . Treatment: 4 weekly treatments of ritixan. Has..." + (show)
@grand4

Diagnosis of b cell non hodgkins splenic lymphoma . Treatment: 4 weekly treatments of ritixan. Has anyone had their spleen removed when diagnosised?

Jump to this post

@caroldk I see you are new to connect welcome.
Although I do not have the same lymphoma or symptoms as you have. Fatigue, and pain I believe is are symptoms, some patients do experience from time to time.
I do recommend you contact your Dr's office. Were you experiencing these symptoms prior to Dec? Or have they started since getting iron infusions?
You could also have been exposed to the flu? Cause we have low resistance to viruses.
Please contact your DR, and let us know what he says if you can?

I wish you the best.
Jackie

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1 reply
caroldk | @caroldk | Feb 14, 2019
In reply to @travelgirl "@caroldk I see you are new to connect welcome. Although I do not have the same..." + (show)
@travelgirl

@caroldk I see you are new to connect welcome.
Although I do not have the same lymphoma or symptoms as you have. Fatigue, and pain I believe is are symptoms, some patients do experience from time to time.
I do recommend you contact your Dr's office. Were you experiencing these symptoms prior to Dec? Or have they started since getting iron infusions?
You could also have been exposed to the flu? Cause we have low resistance to viruses.
Please contact your DR, and let us know what he says if you can?

I wish you the best.
Jackie

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Hi Jackie, I was experiencing some of the symptoms prior to the iron infusions. I had fatigue and pain but it's gotten worse but I didn't run a fever. My Lymphoma is very rare, and I heard that some Oncologists don't know a lot about it. I will keep you updated as to what he says.

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