treatment for marginal zone NHL now active in lining of my lung

Posted by hhminerva @hhminerva, 1 day ago

Hi all, I'm wondering if anyone here has gone through treatment with Rituxin and Bendamustine, and how you handled side effects? I realize everyone is different! I'm looking for support and learning what you've learned about the experience, and which questions to bring to my healthcare team. And -- Is there a support group for this form of NHL which meets as a group on zoom for conversation and sharing?

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

Lori, Volunteer Mentor | @loribmt | 16 hours ago

Hi @hhminerva Welcome to Mayo Connect. There are several members in the group who have been diagnosed with MZL (marginal zone leukemia), one of several forms of Non Hodgkin’s lymphoma (NHL). Most are treated similarly with Rituxan and Bendamustine. So there are quite a few conversations in the group sharing their experiences.

This article by Mayo Clinic is a good tutorial on MZL. At the end of the article are prompts for questions you may want to ask your medical team. https://www.mayoclinic.org/diseases-conditions/marginal-zone-lymphoma/symptoms-causes/syc-20586112

But also, don’t hesitate to pose questions to fellow members! We are a supportive group in Connect. I did a quick search for you for discussions that will be relevant for you…but too many to post individually. So I’m being a slacker this morning and posting the links so you can pick and choose. ☺️. Feel free to pop into any conversation!
Discussions surrounding members with MZL:
https://connect.mayoclinic.org/discussion/treatment-for-mzl/
Discussions regarding treatment with Rituxan and Bendamustine:
https://www.mayoclinic.org/diseases-conditions/marginal-zone-lymphoma/symptoms-causes/syc-20586112
I don’t see any zoom meetings for NHL in Mayo’s roster. But it looks like there may be support meetings with Lymphoma.org.
https://lymphoma.org/resources/supportservices/
How soon will you begin treatment? What type of symptoms led up to your discovery of MZL?

hhminerva | @hhminerva | 4 hours ago

In reply to @loribmt "Hi @hhminerva Welcome to Mayo Connect. There are several members in the group who have been..." + (show)

Hi Lori,
Thank you for your understanding and helpfulness. I really appreciate the
links to articles, as the info I have from my hematologist is not (yet) so
specific.

With active cancer located in the lining of my left lung, it's difficult to
get a biopsy or other evidence for determining exactly what kind of NHL I
have.

Marginal zone NHL, stage 3, was the diagnosis given to me after a lymph
node (under my jaw) was biopsied five years ago.

Altho I had 6-monthly bloodwork and dr visits for the past five years,
nothing seemed amiss until I had shortness of breath and then pleural
effusion starting in Jan- Feb 2026, with 1.5 L drained off by thoracentesis
in late March. Four weeks later, again short of breath; then
1.3 L was drained off.
Then a PET scan which showed that the indolent character of my NHL had
flared and somewhat large nodes(1.3-2.6)in the lining of my lungs needed
attention.
Thus, I will start immunotherapy and chemo on May 7. I am 80, healthy,
active, engaged, with friends and family who are eager to help. Tho slowed
down, I still manage to walk the dog about 2 miles daily.

I welcome your suggestions, resources, and anything you'd like to share

Warmly,

Helen Hobart

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