The first 60 days: Kaposi sarcoma
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. 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. Sections appear only where the record has something to say. Orientation, not medical advice.
What happens now
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.
- SurgeonNamed in the standard of care for: Resource-limited settings.
- Medical oncologistNamed in the standard of care for: AIDS-KS, limited (T0), AIDS-KS, advanced (T1) or symptomatic, Classic or HIV-negative KS, Iatrogenic KS and 1 more.
- Clinical oncologist (radiotherapy)Named in the standard of care for: AIDS-KS, limited (T0), Classic or HIV-negative KS.
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.
- 3.AIDS-KS, advanced (T1) or symptomaticNCCN category Category 1 (PLD, paclitaxel); 2A (pomalidomide), NCCN Guidelines: AIDS-Related Kaposi Sarcoma
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.
Newly diagnosed
- What is my exact diagnosis, stage, and grade, and which tests established them?Everything else follows from an accurate stage and subtype.
- Which biomarkers have been tested on my tumour (for example HHV-8 LANA-1 immunohistochemistry, HIV status, CD4 count, viral load, ACTG TIS staging, KSHV viral load, Visceral involvement), and what were the results?These results decide eligibility for targeted therapy, immunotherapy, and trials.
- Which subtype is my cancer, and does that change the recommended treatment?Recognised subtypes for this cancer include ClassicKS, Endemic African KS, IatrogenicKS.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
AIDS-KS, limited (T0)
- For my situation (aids-ks, limited (t0)), which of the standard options do you recommend and why?Guideline options include: Antiretroviral therapy; observe for regression (watch for IRIS-KS flare); local therapy for cosmetically or functionally important lesions.
AIDS-KS, advanced (T1) or symptomatic
- For my situation (aids-ks, advanced (t1) or symptomatic), which of the standard options do you recommend and why?Guideline options include: ART plus pegylated liposomal doxorubicin (preferred) or paclitaxel; pomalidomide as an oral option; continue until maximal response.
- Am I a candidate for Pegylated liposomal doxorubicin, Paclitaxel / nab-paclitaxel, Pomalidomide, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Classic or HIV-negative KS
- For my situation (classic or hiv-negative ks), which of the standard options do you recommend and why?Guideline options include: Local radiotherapy, intralesional vincristine or cryotherapy for few lesions; pegylated liposomal doxorubicin, paclitaxel or pomalidomide for extensive disease.
- Am I a candidate for Pegylated liposomal doxorubicin, Paclitaxel / nab-paclitaxel, Pomalidomide or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Iatrogenic KS
- For my situation (iatrogenic ks), which of the standard options do you recommend and why?Guideline options include: Reduce immunosuppression; switch calcineurin inhibitor to sirolimus/everolimus; chemotherapy if progressive.
- Am I a candidate for Everolimus, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Resource-limited settings
- For my situation (resource-limited settings), which of the standard options do you recommend and why?Guideline options include: ART plus paclitaxel where available (ACTG A5263); bleomycin-vincristine otherwise; task-shifted oncology nursing models.
- Am I a candidate for Paclitaxel / nab-paclitaxel, Bleomycin, Vincristine, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Any stage
- Are there clinical trials I could join, for example of Pomalidomide, Pembrolizumab, Nivolumab?Trials are how the next standard of care is set; asking early keeps options open.
- Would a second opinion at a high-volume centre change anything, and can you help arrange it?Rare or high-stakes decisions benefit from a centre that treats many similar patients.
- What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?Supportive care improves quality of life and helps patients complete treatment.
- I read that “Access to effective chemotherapy and ART-linked cancer care in sub-Saharan Africa”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “KS in people with suppressed HIV and normal CD4 counts (unexplained)”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Kaposi sarcoma: the full pageKaposi 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.
- One-page appointment sheetYour questions, the words you may hear, what to bring, and space for the answers. Print it.
- Treatment sequencingWhich treatment tends to follow which, line by line.
- NavigatorStandard of care for your stage, what you have tried, and trials near you.
- Immune-related adverse events (irAEs): Immune-related adverse events (irAEs) are the autoimmune side effects of checkpoint inhibitors: colitis, thyroid problems, rash, hepatitis, pneumonitis.
Every term links to the glossary.