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 | May 19 7:10am
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 | May 20 7:14am
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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1 reply
elainejarrett | @elainejarrett | May 20 8:54am
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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1 reply
monicalu2626 | @monicalu2626 | May 21 7:25am

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.

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dottie47 | @dottie47 | May 23 3:51pm
In reply to @trixie1 "What were you treated with? I took had stage 4 SMZL in January 2023. Was given..." + (show)
@trixie1

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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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 😊

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dottie47 | @dottie47 | May 23 3:53pm
In reply to @elainejarrett "I too have splenic marginal zone low grade b cell lymphoma/leukemia. Started with decline in platelets..." + (show)
@elainejarrett

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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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 🙏💞

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