I also had no side effects to Rituximab, so I can't be of any help. Hope things get better for you. Stay strong we are all in this together.
Member has chosen to not make this information public.
Member not yet following any Pages.
@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.
@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.
I was diagnosed with splenic marginal zone small b cell lymphoma in April of 2017. The Doctors at Mayo Rochester removed my enlarged spleen July 2017. In September 2017 I had another bone marrow biopsy and flow cytometry and the lyphoma was still in the bone marrow. In October I started 4 weeks of Rituxan. Had no side effects to the Rituxan. After the Rituxan the lymphoma is now gone but I still have night sweats and fatigue . I am now on wait and watch until the end of January next year.
I was diagnosed in May with splenic marginal zone lymphoma. For the past 6 years I have been dealing with Itp. Now it turns out that it was smzl.I had my spleen removed in July. Now I am waiting until April to have another bone marrow biopsie to see if the lymphoma in my marrow go down. Does anyone have any advice?