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 group.

Welcome @sabtahis. Splenic B cell Marginal Zone Lymphoma. is rare and accounts for less than 2% of lymphoma cases. April, can you tell us a bit more about yourself? When were you diagnosed? How are you doing now?

REPLY
@colleenyoung

Welcome @sabtahis. Splenic B cell Marginal Zone Lymphoma. is rare and accounts for less than 2% of lymphoma cases. April, can you tell us a bit more about yourself? When were you diagnosed? How are you doing now?

Jump to this post

Morning
Thanks for forwarding my e mail to an appropriate group.I mostly interested
in learning about SMZL and prefer private conversation thru e mail and not
the post.I’m a former health care worker and fairly knowledgeable about
the medical issue around this diagnosis and the disease process.
Thanks for all you do.April

REPLY

Well I’m a rare but not unusual case still looking for someone who was diagnosed with Cecum Cancer stage 1 and Follicular Lymphoma both at the same time. My lymphoma is as well, a very slow growing cancer. I have yet to find someone else with the exact Double Trouble as myself. I have found close but not exactly the same. I have been on a few different cancer sites too. I can tell you that Mayo Clinic has many studies ongoing for lymphoma. You also want to look at John Hopkins. They also have done lots of Lymphoma studies.. I wish you the best…

REPLY
@colleenyoung

Welcome @sabtahis. Splenic B cell Marginal Zone Lymphoma. is rare and accounts for less than 2% of lymphoma cases. April, can you tell us a bit more about yourself? When were you diagnosed? How are you doing now?

Jump to this post

@sabtahis, Connect is a public forum. The emails you receive are notifications letting you know when a new public post has been made. Feel free to use the private message function to connect privately with other members. However we encourage the use of the public forum so that many can benefit from the sharing of experience and knowledge.

REPLY
@colleenyoung

Welcome @sabtahis. Splenic B cell Marginal Zone Lymphoma. is rare and accounts for less than 2% of lymphoma cases. April, can you tell us a bit more about yourself? When were you diagnosed? How are you doing now?

Jump to this post

Hello,
I am currently in remission from SMZL. Next week will be my last maintence treatment with Rituxan. I’m not sure what my oncologist will recommend regarding follow up care. It has been a long road, but as far as cancer goes, it went pretty well. I would be happy to talk via email with anyone else dealing with SMZL. It’s rare which makes it hard to find others with this diagnosis.

REPLY
@colleenyoung

Welcome @sabtahis. Splenic B cell Marginal Zone Lymphoma. is rare and accounts for less than 2% of lymphoma cases. April, can you tell us a bit more about yourself? When were you diagnosed? How are you doing now?

Jump to this post

Welcome to Connect, AndiLynn. Please meet April, @sabtahis who also has splenic B cell marginal zone lymphoma. Indeed, SMZL is rare, so I hope the 2 of you will connect.

During your treatment did you ever meet a patient with the same diagnosis?

REPLY
@colleenyoung

Welcome @sabtahis. Splenic B cell Marginal Zone Lymphoma. is rare and accounts for less than 2% of lymphoma cases. April, can you tell us a bit more about yourself? When were you diagnosed? How are you doing now?

Jump to this post

Hi Colleen,

Thank you for your email. I have met two other women through another website who have SMZL. One just finished her initial six weeks of Rituxan. She’s very private and hasn’t said whether she’ll be having maintenance therapy. The other woman is still watch and wait. I was diagnosed in November 2014 and started treatment right away. Next week is my last infusion. If I can help April or anyone else, I’m happy to do so.
Take care,
Andi

REPLY
@colleenyoung

Welcome @sabtahis. Splenic B cell Marginal Zone Lymphoma. is rare and accounts for less than 2% of lymphoma cases. April, can you tell us a bit more about yourself? When were you diagnosed? How are you doing now?

Jump to this post

All the best with the last infusion next week. Stay in touch.

REPLY

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?

REPLY
@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?

Jump to this post

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?

REPLY
@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?

Jump to this post

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.

REPLY
@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?

Jump to this post

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.

REPLY
Please sign in or register to post a reply.
  Request Appointment