I was diagnosed with melanoma last summer. They took a chunk out of my leg, and 7 or 8 lymph nodes. Theoretically I'm in the clear now, but I would like to know if the lymphemema that arose as a complication of removing my lymph nodes will ever go away. I've gotten several different opinions from those with varying degrees of medical education, including my doctor, but does anyone know for sure?
Details that could matter: 15 years old when the surgery occured (more chance of healing?), youngest person Duke Oncology had ever treated (nobody knows if it could happen?), I have to wear a compression stocking, but only when excercising or "engaging in physical activity".
Hi I am sorry no one has been able to offer advice. Not many on this board have staged melanoma. I am stage 2B but did not have an SNB therefore no following dissection. I have heard from other sources I have about your problem, and it seems that in some cases (no exact measurment of patients) that it takes either a short period or a long period. The compression stocking seems to work well. k
They also get 'draining therapy' on a regular basis for when the fluid builds up. I am sorry I cannot help you.
Age doesnt have anything to do with it. and not everyone is affected after node surgery.
First of all - congrats on being free and clear of melanoma!!!!
As far as I know, Lymphedema has no cure YET. There are treatments available (including Manual Lymph Drainage massage and compression.) Sounds like you are already doing the compression stockings.
With any hope, there will be a cure soon. Most lymphedema patients are breast cancer survivors. I think with all the research put into breast cancer awareness and the thousands (or more) women suffereing from lymphedema as a result of having their lymph nodes removed, a cure could be on the horizon.
In the meantime, elevating your feet and wearing your support stockings are very important. Talking to a vascular surgeon might also be a good idea.
As someone who has had lymphedema in the legs since I was 10 (42 now), and no it does not go away.
You can keep it under control (to whatever extent) by avoiding standing for long periods of time. Personally I dont wear the compression stockings as I dont sweat and they can get extremely hot in the summer.
Exercise suck as walking, running, etc is one of the main keys in keeping lymphedema at a minimum. The use of the leg muscles forces the fluid to move up and out.
If you find that your legs/feet get extremely swollen by the evening, check with your dr and see about getting a compression machine which helps to stimulate the legs and pushes the fluids out (I use mine every night for about 1 hour). It should be covered by your insurance company
If you need to know anything else, let me know
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Hi Paulie, I have lymphedema too. Mine came from a fall, and an injury to my low back. I can tell you to keep it under control, it is important not to give the swelling an inch. It will go higher if you don't stop and get your feet up. It will continue to your groin in some cases. I am so mad, I was never given any warning by anyone. And thats after 50 hospital and doctor visits. They're explanation was one of little importance untill it was to my knee. It sounds like you are just starting to check this out, and unfortunately it's up to you to do the educating. I did run into a group called the lymphedema people, it was a support group online, and they had a great deal of information. Good luck! LD