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Below, week by week, is what OnCo's record of Kaposi sarcoma says about the first two months: the order is typical, the timing is yours to ask about. Kaposi sarcoma is a blood-vessel cancer caused by the herpesvirus HHV-8, made famous by the AIDS epidemic. In people with HIV, antiretroviral therapy alone often shrinks it; liposomal doxorubicin or paclitaxel treat advanced disease, and it remains among the commonest cancers in sub-Saharan Africa, where paclitaxel is often unaffordable. 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.
Antiretroviral therapy; observe for regression (watch for IRIS-KS flare); local therapy for cosmetically or functionally important lesions.
ART plus paclitaxel where available (ACTG A5263); bleomycin-vincristine otherwise; task-shifted oncology nursing models.
ART plus pegylated liposomal doxorubicin (preferred) or paclitaxel; pomalidomide as an oral option; continue until maximal response.
Local radiotherapy, intralesional vincristine or cryotherapy for few lesions; pegylated liposomal doxorubicin, paclitaxel or pomalidomide for extensive disease.
Reduce immunosuppression; switch calcineurin inhibitor to sirolimus/everolimus; chemotherapy if progressive.
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.
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.