1. < Blood Cancers & Disorders

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

Posted by April @sabtahis, Jul 24, 2016

There are over 80 different subtypes of lymphoma . This is a slow growing lymphoma.I'd like to know and communicate with any patient if possible.

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dottie47 | @dottie47 | 1 day ago
In reply to @cdwilm27 "I had my Rituximab infusion on 10/14 and 10/15. The nurse administered premedication of Benadryl and..." + (show)
@cdwilm27

I had my Rituximab infusion on 10/14 and 10/15. The nurse administered premedication of Benadryl and Tylenol prior to the infusion start. About 20 minutes into the Rituximab infusion which was started at a very slow rate, I began having shortness of breath and upper chest pressure. I was also very flushed my nurse told me. I was given O2 via nasal cannula and an IV cortisone of some sort. They restarted the medication again after about 15 minutes and the same thing happened although not to the same extent. At that point, they decided to give me some IV Demerol to assist with my infusion. I was only given a third of the medication on the first day. I returned the next day for the rest of the Rituximab and there were no side effects at all. The nurse who took care of me both days also gets Rituximab infusions so that was very helpful to have his perspective. My next infusion is on October 21st.

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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 🙏❤️

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trixie1 | @trixie1 | 10 hours ago
In reply to @dottie47 "I pray you are doing well 🙏 I was diagnosed with stage 4 marginal zone b..." + (show)
@dottie47

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 🙏❤️

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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

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elainejarrett | @elainejarrett | 9 hours ago
In reply to @dottie47 "I pray you are doing well 🙏 I was diagnosed with stage 4 marginal zone b..." + (show)
@dottie47

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 🙏❤️

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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.

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