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

I found a fairly straight forward article explaining the differences between Marginal Zone Lymphoma and Splenic Marginal Zone Lymphoma.
This is an excerpt from the site I posted below. It goes into some good detailing of differences and similarities between the two.
“ Marginal zone lymphoma (MZL) is a rare subtype of non-Hodgkin Lymphoma (NHL). It refers to a group of lymphoma type blood cancers that happen when some of your blood cells – called B-cell lymphocytes (B-cells) become cancerous. The three main subtypes of MZL include MALT, Nodal and Splenic MZL”.
https://www.lymphoma.org.au/types-of-lymphoma/non-hodgkin-lymphoma/indolent-slow-growing-b-cell-nhl/marginal-zone-lymphoma-mzl/#:~:text=Marginal%20Zone%20Lymphoma%20%28MZL%29%20–%20MALT%2C%20Nodal%20%26,cells%20–%20called%20B-cell%20lymphocytes%20%28B-cells%29%20become%20cancerous.
How have you been feeling? Any change in your status?

What is the difference between Marginal Zone lymphoma and Splenic Marginal Zone lymphoma?

cdwilm27
It is nice to hear your positive report. Also good to hear the infusions worked well as this will probably be prescribed for me sometime in the future. Thanks for the update.
My checkup in April showed normal progression of SMZL, Also found fluid ( small Pleural effusion) in the left chest. They removed most of the fluid and lab tests indicated it was potentially related to SMZL, rather than the lung cancer and my November wedge resection surgery. My appointment last week showed a decreased fluid amount and hematology will see me again in 3 months. Next week I see the Oncologist and will get their assessment of the fluid. They are also monitoring a suspect nodule in the chest sternum area.
Am wondering if anyone else experienced plural effusion caused or related to SMZL.? Thanks

I was diagnosed with SMZL Sept 2021. I had 8 infusions of Rituximab which ended 12/20/21. My June follow up showed normal labs and my spleen was even smaller at this visit. My doctor was very hopeful as I reported feeling great and had not lost any weight. Next labs and most likely another US in Sept.

We have similar timeframes. Good luck on your results. I get my results from my doc on Thurs & if my numbers do not go down or have gone stagnant, I am going to push for her previous advice of 6 more rounds, especially since I am under my employment insurance & after paying my part of the costs, have hit my maximum from January's treatment for this year. Definitely let me know about your results and sending positive thoughts! Know what you mean about selling a house, I sold mine in February and it was a distraction from the cancer. I have to work up to another massive distraction for this next round. Cheers

I was diagnosed October of 2021. Started my Rituximab on 10/14 and ended 12/20/21. I had 8 infusions, one a week except for a 3 week break around Thanksgiving when I traveled to Calif to be with my daughter and her family. The day after my last infusion I got on a plane for Raleigh, NC to spend Christmas with my son and his family. I had my flu, Covid shots and 2 boosters. I have been very fortunate not to have contracted Covid in all my traveling.
I just scheduled my abdominal ultra sound for Thursday of this week and will have my labs drawn on 6/23. This time from January to June has been stressful with my husband and I legally separating and selling our home. However I rarely thought about my cancer diagnosis with all the work of moving out of one home and into another. I will let you know what my results are from this next appointment with my doctor.

Your words inspire me - how long ago was cancer diagnosed? I am finding comfort in what appears to be a number of us that are still leading productive lives.

How long ago were you diagnosed? Thanks

Hi Sally,
I'm glad you were able to find the right oncology practice, well worth the drive I'm sure.
I have to go back to my oncologist 6/28 for follow up. I will have labs done prior to this appointment which will determine next steps. Overall, I am feeling great. I'm just hoping there is not disappointing news regarding my labs. I have a summer full of small trips planned and I really don't want to change anything if possible.
Where are you located?
I miss my old home which had an open fence to a greenbelt and lots of animal/bird sightings. However I don't miss the stress of living with my husband. My new home is much smaller, but much easier to clean and lots of friendly people nearby.

Good to read your input Sally. It does seem that many of us were living a healthier than usual lifestyle and I went through a period of searching for alternative treatment that would at least put this in remission. I do think this is a long journey and I will go through many moods with it. At this point I try to focus on appreciating every day. In a sense, I am lucky to have this diagnosis so early. I have years (hopefully) to remember, everything is impermanent. My mantra is accept, adjust (do what you can to help yourself) and repeat (know you'll be at this cycle again). The big reminder is the spleen of course, impossible to ignore, but I take great solace that I do not view this as a tumor. This valiant organ is struggling against the odds every day to help me, doing it's best. Having watched my father die of esophageal cancer, I know full well the horrors tumors can present. A compassionate view of my spleen helps me diminish the fear a bit. The encouragement and inspiration I read here is definitely helpful! Thanks for sharing.