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Lymphedema in both legs
Jun 19, 2013

Dear Dr. H-

My partner started experiencing Lymphedema in one leg about a year or so ago and now seems to be spreading to both legs. He has been battling KS in both legs for about 5 years that seems to keep spreading without stopping and recently completed 6 months of chemo but the lymphedema doesn't seem to have improved and may have gotten worse. Still unclear if the chemo reversed the KS or made it better. His CD4 is over 400 and VL undetectable. He is 65 if that matters. He complains of his legs being very cold all the time and has tried the compression socks without luck. He also has stage 2 kidney disease I think it is. Is this life threatening or could it get to the point of immobility? Also is there a specific Dr. he should see? He mentions it to every Dr he sees but they just seem to brush it off. Thanks for taking the time to answer my question and your guidance.

Response from Dr. Henry

KS when systemic often involes some lymph nodes that canbe fairly fragile with any damage causing disruption in the flow of lymph fluid, against gravity, up from the feet/legs and towards chest/heart. The anatomic problems/scarring/swelling/increase pressure that can result in lower extremity lymph edemia are often multi-centric/diffuse and not amendable to any easy fix. Pressure stockings, exercise, raising legs. a scan to look at likely site of flow disruption, assessment of nutrition (protein levels), kidney/liver/heart health can impact lymphedema in some patients. The bottom line is that often the problem is peristent, annoying, and can be difficult to manage for many patients. KH

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