Mayo Clinic Connect
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.
Hi @sabtahis. I moved your message to the Cancer group where I think you are more likely to meet other people living with lymphoma. As yet, no one else has mentioned Splenic B cell Marginal Zone Lymphoma. Like you said there are many types and SMZL is very rare account for less than 2% of lymphoma cases. However, I would like to introduce you to a few other members who have rare cancers or different types of lymphoma. Please meet @hopeful33250 @travelgirl @vonbaron36 @thorsmom1959 @cathydy @michaelb
April, can you tell us a bit more about yourself? When were you diagnosed? How are you doing now?
Liked by Jackie, Volunteer Mentor
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MorningThanks for forwarding my e mail to an appropriate group.I mostly interested in learning about SMZL and prefer private conversation thru e mail and notthe post.I’m a former health care worker and fairly knowledgeable aboutthe medical issue around this diagnosis and the disease process.Thanks for all you do.April
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…
Liked by Colleen Young, Connect Director
@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.
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.
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?
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
All the best with the last infusion next week. Stay in touch.
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