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

Judy, sadly that’s par for the course with some of our blood diseases…fatigue. And with that drop in your husband’s hemoglobin, albeit small, it can make a difference in the oxygen level in his breathing along with the amyloidosis.

I’m sure this is so frustrating for both of you. It’s hard being the caregiver with trying to be the cheerleader. I hope your husband finds some positive activity he can do daily to keep pushing forward. Truly, I do understand and it’s easy to want to just give up. But it’s so vital to always look forward to something on a daily basis. We need longterm goals even when we don’t feel there’s a future!
I remember when my mom was diagnosed with kidney cancer many years ago. She mentally gave up! I did my best to encourage her but she was so pessimistic that there was no hope. Well, there was hope! And at one point, I even got a little miffed because her doctors had said that, though inoperable because of her age, she could possibly have several good years! So I ended up telling her that it’s her choice…she can either choose to abide in this sad, morbid existence which in which she is already on her ‘death bed’ or she can choose to live until she does pass away. Guess what! My mom chose life and had several really fun years resuming all activities she’d given up because she felt she was a goner. Our mental attitudes can really make an enormous difference in determining our daily lives.
I hope you’re finding some goodness in every day too. ☺️

Lori,
Thank you for the information and for your inquiry s to how my husband is feeling.
At this point- active surveillance - fatigue and some SOB are the two main
symptoms Cardiac amyloidosis is a contributing factor Hemoglobin dropped also from 11.2 - 10.8
Mentally difficult at times
Judy

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