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

@caroldk are you able to get a second opinion from Mayo Clinic. They have a HUGE building and wing they just built in Jacksonville. Fl. They have all kinds of studies going on specifically geared towards Lymphoma. Can you reach out to them for a consultation? They also have facilities in Phoenix and Rochester, Mn. Maybe one of the Dr's there can help you? Or they have a study you can get in that maybe of benefit to you?

Does soaking in a warm bath help your symptoms at all? Or maybe applying some Ben Gay to the sore spots?

I wish you the best.
Please keep us posted, but do call your DR and see if he can give you some answers and help to alleviate your symptoms.

Praying you get relief..
And I hope you have a Nice Valentine Day..
Jackie

@caroldk I also have SMZL I was diagnosed in April of 2017 at Mayo Rochester. In July 2017 I had my spleen removed at Mayo. I went back home, then in September 2017 I had another bone marrow biopsy that showed that I still had lymphoma in the marrow. So I went on 4 weeks of Rituxan. I have the same problems as you do with fatigue, random pain in joints and muscles. My temps can range by up to 3 degrees from morning to night. If you have any questions just ask. If you don't mind sharing how did you receive the diagnoses of SMZL? Good luck to you.

Thank you Jackie. I would love to go to the Mayo clinic. I will check into it. Thank you so much for your advice. Happy Valentines Day to you also. Prayers for you at well.

Thank you so much for sharing with me what's going on with you. I had pain in my stomach and I was anemic so a Ct scan was done. My spleen was enlarged so I was sent to see an Oncologist. He ran a JAK 2 blood test and he said if it came back negative that he would do a bone marrow biopsy. It came back negative so he did the biopsy and it showed SMZL. This is so new to me and because it's so rare, I feel alone with it. I'm not sure I like my Oncologist either so that doesn't help.

@caroldk I also am JAK2 negative & CD20 negative. Please don't feel alone there are a lot of great people here that you can always communicate with. As far as for SMZL it is slow growing and people live a good and long life with it. As for Mayo I can't recommend it enough. I am been to Rochester 3 times in the past two years and it has always been a great experience. Best wishes for you.

Steve

Has this non Hodgkin lymphoma been discussed where it has progressed to the lung area?

Hello @waltera. You may notice I moved your discussion and combined it with a discussion of the same title. In this discussion, you can read @scsimpson's experience. I'd also like to invite @andilynn, @grand4, @bordercolliecra to this discussion to share their experiences with splenic lymphoma.

@waltera, has your cancer spread to this area or is this something that is suspected?

Justin, I think you’re doing a great job. Yes, it has spread to the lung area. I was treated with rituximab but it appears that it has returned based on a PET scan. I have frequent blood work as a monitor. I’m 84 years old and very fortunate I have no symptoms but I’ll probably try some form of treatment again this summer.

My name is Laurie and I was diagnosed almost 2 years ago with SMZL after routine bloodwork for an ortho procedure. I wasn’t officially diagnosed until after a bone marrow biopsy. I am extremely lucky to have been diagnosed early, and quarterly bloodwork find me remaining pretty stable. I am 64 years old and fairly active.

Has anyone seen or heard about healthy lifestyle models for SMZL patients? There isn’t a lot of research because we’re so rare, but I’d like to be as proactive as possible and find resources on diet, exercise, and mindfulness as it pertains to the immune system. So happy to have found a current group!

My husband has three lung nodules metastized from lymphoma, diagnoses may be splenic marginal zone lymphoma though they are not certain, lung biopsy positive for lymphoma, bone biopsy some large B cells. Haematologist feels some cells indolent some aggressive. Waiting for treatment. Enlarged spleen 24cm., anemia, low red blood cell count. Elevated calcium CRIT twice in two months has had seven blood transfusions so far both CRIT times with added anti-calcium drip.