January 30, 2019 at 11:39 am #23106
Just wondering how many of you suffer from Lymphedema, even Stage I and how you deal with it. I have stage I and I manage with compression and exercise.
January 30, 2019 at 2:31 pm #23108
How are you feeling? Thanks for the posting on lymphedema. I am not sure what level I have, but it generally is not too bothersome. So happens today, it is being a pain. My foot is swelling, tingling and leg is heavy. Likely I have been sitting for too many days on the computer doing work. I try not to and to elevate,to do a bit of lymphatic drainage, but doesn’t always work. Sitting for extended periods is a killer and bad for one’s health altogether, but work these days doesn’t always accommodate. Walking and swimming helps tremendously as any exercise does and all the things you say also helps. It is just one of those things in life we have to contend with. Could be so much worse so I try not to complain. Life is good with all of its ups and downs.
Thinking if you ans sending good vibes. Annette
January 31, 2019 at 3:11 pm #23113
I am feeling well. I have pretty much eliminated any lymphedema that flared due to surgery. Do you use compression stockings? I don’t I find them “too much” and more of an all or nothing with no in between alternative. Have you tried Tubi-grip for your feet and lower extremities. Very inexpensive at the drug store, about $5 a meter. When my whole leg is bothering me I will start there, use a product by Synergy ( drug store again) that goes from ankle to mid thigh and finish with a “spanx” product. If my thigh is particularly edematous I will use a tensor and the spanx will help keep it in place. I will sometimes then wear a compression yoga pant to finish it all off. The beauty is any can be removed if you become uncomfortable or if they are no longer necessary in that area.
As you know my job goes the other way, continually on my feet and exposed to viruses and bacteria that engage my lymph system and aggravate the edema. I have talked to more than a few people, here and on other forums, that are very afraid of having surgery and possible lymphedema. I guess I wanted to share that it can be managed in many ways that are outside the box.
February 16, 2019 at 4:09 pm #23359
This topic is much on my mind at the moment! I was diagnosed with Stage III melanoma (probably from a youthful belief, long ago, in my own immortality. Sunscreen – what’s that for?) and almost six years ago had CLND. A remarkable surgeon at the Juravinski made sure it would not bother me again for a long time, but removal of the lymph nodes from the right groin made sure I would not forget it. I tell people that lymphedema (I’m used to ‘lymphoedema’) is the booby prize awarded to cancer patients who think they’ve got away with it. I now use inelegant compression stockings – more like tights with one leg shortened – and they work well for keeping the swelling under control. By the end of the day when I peel them off, there may be a little swelling visible, but not much. But they are on all day and every day, and when you are tired, it can be tough. The only exception is when I go swimming, and I put them on when I get home – too much undignified wrestling to want to do it in the changing room. Swimming is good, as the hydrostatic pressure is as good as the stocking – perhaps better.
I had lymphatic draining massage frequently at the start, but now go about every five weeks. It has worked well for me, with the benefit of being looked over by a physio who has worked as a cancer nurse.
The warning you will always hear is to avoid any skin damage that may lead to infection and cellulitis. I succeeded for five years, and then had two episodes in quick succession, resulting in hospital admissions. One was blamed on a mosquito bite. The first time, it wasn’t diagnosed right away and that was the only time I’ve had serious swelling – quick action is essential! I don’t know if that was the cause, but the leg has been more difficult to deal with since then – more stiffness, mostly.
That was mostly venting about my own experience – I am not sure if it will be helpful. There is much more to the story of course, with the radiation and its aftermath, and an unfortunate encounter with Interferon.
February 25, 2019 at 11:20 am #23467
Seems that I had much the same surgery but on the left side, we might have even had the same surgeon. I did not have radiation but had the year long encounter with Interferon. MY Lymphedema, until now, has been controllable without compression stockings. I usually use a series of garments, depending on the flare up. My biggest discovery was early on, slow but steady weight training ( squats, lunges, etc. ) with compression garments on, helped radically. My flare ups became less severe, shorter in duration and more predictable. My flare up were usually associated with; systemic virus like a cold or flue vaccination.
I have since had a recurrence in the same area and another dissection. I am hoping the lymphedema will remain at stage I even after this recurrence
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