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

Stan, I’m hoping your Rituximab infusions are less traumatic and you are seeing your lab results go in the right direction. Eating healthy is super important. You have to treat your body like it’s a Ferrari and only give it the finest fuel. I see my oncologist for follow up on 9/20. Keep me informed on your progress.

cdwilm, I hope you have a postive oncologist visit on 9/20.
My infusion on Tuesday went very well. No reaction or body aches. Such a relief. The pre infusion blood test showed small movements in the correct direction. I can feel my spleen is a bit smaller and less sensitive. Two more to go.
All good except I'm concerned about having a weakened immune system and how to get out of the house a bit and interact with family, friends, public, etc.
Thanks for all the well wishes.

At this point seems to be NMZL; however when I asked about WM SMM the oncologist drew three interconnecting circle and indicated the commonality and shared elements.
Please clarify the meaning /significance of these terms:
MZL Mspike1.5
rare combination AL heart ( WATTR cardiac amyloidosis and AL smaller amount in myocardium confirmed by myocardium biopsies)
NGS: MYD88 NSD2 KMT2D TP53 +11q- 13q- and 19+4

@jam5, did you have a lab report or imaging study after meeting with your oncologist? When will you have a chance to discuss these results and know the treatment plan?

@stanleykent, were you able to resume treatment with rituximab? How are you doing?

Labs were done prior to the office visit
Repeat labs and follow-up office visit in 3 months - no treatment at this time
Also under care of radiologist specializing in amyloidosis

Colleen
Hello , I completed the four rituximab treatments. The last one was Sept 13. As mentioned, the first was difficult but the other three went well and was just bit tired after each. I feel good and also just received the new covid booster. I have follow up appointments mid November. Thanks for checking.

Hi Stan, I have not been on here in a while. Are you continuing to feel the benefits of the treatment? After 3 years of watch and wait I am to begin single agent Rituxan in mid January due to my spleen size more than anything else. I believe you mentioned you could feel your spleen shrink, has that continued also? I've been told it will never go back to normal, too stretched out. Thank you for sharing your initial difficulties, as I am forewarned the first treatment is likely rough. The dr. confirmed this likelihood but said that means its working. How did you make decisions about isolation? Were they following your immune factors to help you decide when to rejoin society in general? Hope you did not suffer any infections as they recovered. I don't recall how long from your time of diagnosis to this first treatment. I feel pretty lucky to have had 3 years. I believe I did read an entry in a forum of a patient who received one treatment and never needed another and he was 8 years out! Not my expectation, but good to hear anyway. Good luck with your mid November checkup. Theresa

Theresa , I had labs and CT this morning and will have Hematology and Oncolgy appointments next week. But just looking in my portal at this morning's test results, the blood tests are all back in the normal ranges. The chest fluid ( pleural effusion ) has gone away. The Spleen is smaller per the CT report and I can also tell it is smaller as I cannot physically feel it anymore. From my perspective, today's tests are good, but  I need to hear it from the doctors.  I do have a slight discomfort in the spleen area, different than it was. Am guessing that is the healing process??? When people ask.... I say   " Age adjusted, I feel great"
We're trying to isolate and wear masks and be careful. So far I have not had any infections, covid or flu. I did receive the covid antibody Evusheld injection after the infusions. I guess the immune system takes a long time to recover from rituximab 3 months to a year. So I will be cautious for a while yet. My family knows I am being cautious and have been helpful and understanding of my situation. 
I was diagnosed with SMZL in June of 2019 and looking back at the blood tests, the Dr thought I probably had it in 2017.
I hope I have answered all your questions let me know if there is anything else. Where are you getting treatments? How many treatments will you get? Hope your infusions go well. ...even the first one. 
Thanks for checking in. This forum has been quiet for a while. I wonder how everyone else is doing?.

Hi Stan,
Thanks for your response; it helps to share experiences. Maybe our discussion will prompt some others to let us know how they are doing. Like you, in hindsight it's obvious I had this long before I was actually diagnosed. My white count had been low for years. If I remember right, your white count is usually high? That is so strange to me to see the two extremes in the same disease. I feel good but I look forward to not having my spleen and my stomach fight it out for space when I eat. This last exam the doctor noted shotty lymphadenopathy in other areas, which was concerning to me. It's time for treatment. It's going to be hard not to visit my grandchildren, I usually go once a month. I am getting Rituxan at my local oncologist's center just 10 minutes from home for which I am grateful. This was arranged by my lymphoma specialist in UVA which is 3 hours away.

How did your appointments go? I hope they were able to confirm your labs are good. I can not really imagine having normal labs again; I'm sure it feels great! My doctor did advise me to wait until mid January to begin treatment because he expects there to be an uptick in flu and Covid with all the holiday traveling. Stay safe and enjoy your Thanksgiving. We do have so much to be grateful for.
Theresa