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Below, week by week, is what OnCo's record of Splenic marginal zone lymphoma says about the first two months: the order is typical, the timing is yours to ask about. Splenic marginal zone lymphoma is a slow-growing lymphoma that grows in the spleen and bone marrow, causing a very large spleen and a raised lymphocyte count but rarely swollen lymph nodes. Many people need no treatment for years; when they do, rituximab has largely replaced removal of the spleen, and hepatitis C should be treated first where it is present. Sections appear only where the record has something to say. Orientation, not medical advice.
Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.
Ask which of these were tested and what the results were; see the report reader for what each value means.
These specialties appear in the standard of care for this cancer. In most centres they meet weekly as a tumour board to agree each plan; you can ask when yours was discussed and what was decided.
A second opinion from a centre that treats many similar cases is normal, not rude; the standard of care tells you what to compare it against.
Each row is a setting from the standard of care, in the order it usually arises. Not all will apply to you; your stage and biomarkers decide which do. The guideline grade, where recorded, says how strong the evidence is.
Watch and wait; antiviral therapy first if hepatitis C is present.
Rituximab alone or with chemotherapy; splenectomy for selected patients; BTK inhibitors or lenalidomide-rituximab later.
An indolent disease of the spleen, marrow and blood. A patient with no symptoms, no cytopenias and a spleen that is not troublesome is watched, sometimes for years. When treatment is needed, the order is: test and treat hepatitis C if present, because direct-acting antivirals alone produce lymphoma remission in a proportion of hepatitis C-associated cases and that is a reason to check before giving any chemotherapy. Then rituximab alone, weekly for four to eight doses, which corrects cytopenias and shrinks the spleen in the large majority and has displaced splenectomy as first treatment. Chemoimmunotherapy with bendamustine and rituximab is used for disease that does not respond or that transforms. Splenectomy is now reserved for patients who cannot have rituximab, whose disease is confined to the spleen and who need a diagnosis, or who have refractory painful splenomegaly. It requires pneumococcal, Haemophilus influenzae type b and meningococcal vaccination at least two weeks beforehand where possible, and lifelong penicillin prophylaxis afterwards. Zanubrutinib has activity in relapsed disease across marginal zone subtypes.
Generated from this cancer's standard of care, biomarkers and open problems. Take the group that matches where you are. To tick, add your own and print, open the one-page appointment sheet.
Trials open now for this cancer in OnCo, largest phase first. Joining a trial is a decision like any other: ask what the comparison arm is, whether a placebo is used, and what happens if you leave. The cancer page searches ClinicalTrials.gov live for more.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
Every term links to the glossary.