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My husband's good friend has bad lymphedema in his leg brought on by lymphoma cancer and a LOT of treatment. Its very painful for him and constantly causing infections, even into the bone, where leg amputation has been considered.

My stepson is a wound care nurse and treats several patients with lymphedema. It's a very painful situation to be treated for, since swelling from all that excess fluid stretches the skin to capacity. I don't think you're alone with your suffering.

Here is a link to an article (one of many) online about lymphedema that is factual and may be of interest to you:

https://medlineplus.gov/ency/patientinstructions/000045.htm

I hope things improve for you soon. Good luck.
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I'd reached out to the National Lymphedema Network for a friend who's son is in a nursing facility and not receiving specialized care. I can't find the reply but remember the respondent saying most people aren't adequately treated.
I hope you'll find something useful on their website at lymphnet.org/patientinfo.
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Mopey, I have quite a lot of familiarity with lymphedema secondary to breast cancer, but little expertise in other types.

Can you tell us specifically what this lymphedema you are dealing with is secondary to? You have posted under "cancer" and so I will assume we are speaking of involvement of arm and underarm on one side related to removal of lymph nodes.

As with all medical questions, this one goes first to your doctor.
We are a forum of strangers who are not familiar with you or your case.
I can tell you that overall it is a shooting match who gets this and who doesn't after the removal of nodes in the case of breast cancer. There are compression garments that help, but more than that many have VERY GOOD results with specialized massage by a specialist from PT who is trained in methods to work with this condition. You would need referral from your doctor.
My first cancer surgery, a right mastectomy 35 years ago, I had two positive nodes so they removed a total of 14 nodes. It was sheer luck that I escaped dealing with any problems with lymphedema (which at best can be quite uncomfortable). I will be having a lumpectomy on left next week, and will not have to face lymphedema because I won't have nodes removed at all. I at 81 will no longer accept chemo or radiation of any kind, so removal of nodes for examination would be moot.

I wish you good luck. Start with your doc. Explain your pain, why, where, how much and what helps (raising arm, etc). Ask for referral to specially trained expert in lymphedema therapy.

I sure wish you the best.
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