Lymphedema, any hints?

Five years out from lumpectomy and lymph nodes removed. Getting a swelled up arm and hand every day now. Was given appointment for OT and getting the sleeve. Anyone dealing with this?

Yeah, I’ve had lymphedema in my left leg and lower torso for the last 6 years. My swelling is pretty bad (my lymphoscitigraphy and subsequent failed surgery showed I had not a single trace of lymphatic tissue remaining in that leg), but I’m extremely diligent in care every single day to keep my leg looking leg-shaped. I’d definitely recommend a custom sleeve. I have one that is “flat knit” that goes from toes to navel, and it makes life almost passable. You can also layer compression on top of it.

If you have swelling that can be reduced, they will probably start you with short stretch bandages. They are pretty tough to deal with, but I promise the custom sleeve will be easier. Hopefully your insurance will also cover a pump. I have a Flexitouch and I do really think it helps.

There is also another poster with upper extremity LE, who I believe developed it post breast cancer.

I’m really sorry you’re dealing with this. LE is pretty much the worst. I still ride, but really have to take time to let my ankle recover. It’s seated exercise, technically!

I’m happy to send you some short stretch bandages if you need them! I have dozens that I never use anymore. They make some really nice padding to protect your skin these days. There are a million little hacks I use everyday, so please feel free to ask!

@SMK thanks. What is Flexitouch?

Here’s their website: It’s a pump that functions a lot like manual lymph drainage. It starts filling chambers with air that help move fluid accumulation out of the affected limb. It’s really nice in that it starts clearing the areas closer to the heart before it does areas like the fingers so that the fluid has somewhere to actually go. My insurance covered most of the cost, and the company actually replaced the chamber part when it wore out.

I will also say that, at least for me, a low sodium diet helps. Or maybe a high sodium diet really does hurt me, is the better way to put it.

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all cancer patients ( and their supporters and allied medical ) should be aware of CURE magazine. It is a free subscription and available on line. They have many nice articles on Lymphedema that might help you gain knowledge. Excellent magazine for everyone search lymphedema

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