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

Of you have Facebook you can add me or message me on there my name is Dottie Lawing 😊 I pray that we all can heal in stay in remission! Sending love and prayers God bless 🙏💞

I had 6 treatments of Rituximab and very first treatment they found out I was allergic to it and my throat closed up and I passed out next thing I know I wake up surrounded by nurses. They promised by the next treatment they would have an allergy med to counteract reaction. Not gonna lie it scared me and made me question continuing treatment,but by the next treatment they had it right. Imagine being allergic to a medicine that saves you're life ! I have been symptom free up to two years now but am experiencing some symptoms I had prior to diagnosis now and they are running tests to see if my cancer relapsed or I developed a secondary cancer which is common with the type of cancer I have which caused my spleen to enlarge drastically. It was so enlarged I wasn't able to keep any solid food down for a year and had to have protein shakes . The only thing thY helped my nausea was the gummies I tried zofran and everything and nothing else worked. I am afraid my cancer may be back or I developed a secondary cancer because I don't have nausea but am spitting up brown thick mucus which I haven't before and just had X-rays done yesterday and doesn't show bronchitis or pneumonia so not sure whYs causing it. It gets very frustrating when Dr can't find what's wrong but you know you're body and know when something isn't right. Sucks cause I don't hAve any family left alive but I have a few friends that are very supportive. I pray everything works out for us all and we remain in remission. This is a horrible disease! May God bless you and keep you safe 🙏 feel free to add me on Facebook whoever would like to my name is Dottie Lawing 😊

sending positive energy. No matter what's going on - there are so many treatments available. It's very common for the indolent b lymphomas to recur, sadly! I'm trying to learn how to accept it as an ongoing chronic illness.

I too have splenic marginal zone low grade b cell lymphoma/leukemia. Started with decline in platelets in 2019. After a battery of tests and a bone marrow biopsy/aspiration, the diagnosis was found. My spleen is getting to the size where treatment is coming. I am quite concerned and sad for you both that it only worked for two years - quite concerning. Let’s all keep in touch.

What were you treated with? I took had stage 4 SMZL in January 2023. Was given 6 rounds of Bedamustine and Rituxin over 6 months. Right now battling severe gastritis

I had a similar reaction to my first treatment as well. Come to find out I was allergic to the Rotuximab and first treatment I had my throat closed up and I passed out didn't remember much til I woke up with nurses surrounding me 🤣 but they gave me allergy meds to counteract it and promised me they would have everything fixed by my next appointment so it wouldn't happen again which they did. It's crazy that a medication I'm allergic to actually saved my life . Not gonna lie after the first treatment I did question if I wanted to continue but only because I was scared after what had happened which is probably normal but I'm so glad I did continue treatment because I have been symptom free for over two years,but recently have been having some symptoms and am praying I haven't relapsed or developed a secondary cancer. My prayers are with you and everyone else having to go through this ! God bless 🙏❤️

I pray you are doing well 🙏 I was diagnosed with stage 4 marginal zone b cell non Hodgkin's Lymphoma and my spleen was so enlarged I was unable to keep any food or liquid down until after starting immunotherapy.i was symptom free for a little over two years but have as recently started having symptoms again and am a bit concerned that either my cancer has relapsed or I have developed a secondary cancer. This has been a long hard process but I am grateful for every day and try to stay as positive as I can despite the circumstances. May God continue to watch over you and Bless you 🙏❤️

Hi I was diagnosed 2 years ago with stage 4 marginal zone b cell non Hodgkin's Lymphoma. My spleen was enlarged and I was unable to keep any food down until they started me on immunotherapy. I have been symptom free for over 2 years until recently I have started to develop symptoms again and see my oncologist on the 22nd of this month. Hope you are doing well .

Yes, I experienced rigors woke me up in the middle of the night. Horrible experience. It only happened after my first treatment. My oncologist at the time didn't have much to say about it. I am sorry to hear you are not getting the results you hoped for. I went through 8 treatments of rutiximab and it is got clear pet. However I was still in constant pain. Totally dismissed by oncologist. Found rare cancer doctor suggested removal of spleen. Removed in 2023, spleen had ruptured within the spleen and was stuck to my diaphragm. I am glad it is gone. Hang in there, be an advocate for your health.

Sorry for not seeing this - I'm not often on this page but appreciate all the sharing. My IGG numbers are usually in the same range as yours. In December of 2024 I developed an infection in my foot (probably due to very dry, flaky skin/diabetic neuropathy which has since been addressed). In January of 2024 my oncologist and I agreed to go ahead with IVIG infusions. I had two - spaced 4 weeks apart, and my IGG numbers jumped to over twice what it had been. When I was next tested - 6 months later - my numbers were back down to the 40's. I assumed I would now be getting IVIG regularly but he said, no, not unless I couldn't shake an infection or other illness. To date, my numbers are about the same although my last blood work, this past week, showed improvement across the board in my WBC and IGG after beginning a new regimen of very regular exercise and dietary adjustments (avoiding all processed food and seed oils in particular.) I should add that I get my flu and covid vaccines yearly and try to avoid crowded scenarios. Hope my experience is of help to you. Laurie