Dr. Dezube I appreciate the work that you are doing to give people like me hope.I am hiv and have KS in my right leg since 1997 and don't seem to be having very much luck with the chemo treatments in my past. I also have a lot of swelling (Edema) in my right leg where the KS is. Is there a treatment that I can't take for the swelling since the chemo is working?
Chronic leg swelling from Kaposi's sarcoma is a particular difficult problem to treat. Sometimes legs remain swollen after the KS disappears. First, I would like to know abit more about the chemotherapy which you received. If you had received either Doxil or DaunoXome, then sometimes switching to Taxol can help. Support stocking can also be useful. It is very important that you remain on HIV drugs which maximally suppress your virus since this too will help the KS. In rare cases, when the leg swelling is particularly severe, I recommend lymphatic compression therapy, a therapy by which compressive bandages are applied to the extremities. It is also important for your provider to make sure that nothing else is going on-- to make sure your swollen legs are not due to heart fatigue, poor protein intake, kidney disease, or something else. Lastly it helps if you put your leg on a pillow at night so that your leg can drain a bit.