is anyone taking steroids for lymphadema and has it helped. Seems like when my husband is in the hospital the swelling goes down. At home it doesn't seem to subside. He is currently taking 10mg of decadron twice a day...trying to figure out if it's worth the side effects to take it.

I realize this doesn't answer your question but I thought I should post it.

I got rid of my lymphedema using massage. My ENT showed me how to do it. I would apply medium pressure above the lymph nodes starting right near my ear lobs, and stroke down. Not pressing hard. The idea is to encourage the lymph to drain from the lymph nodes. I got into the habit of doing this a few times a day, several strokes each time. It took several weeks, but one day I went to do it and noticed it was all gone.

The other choice I had was the cancer center where I was treated offers a lymphedema evaluation and treatment. My ENT had written me a prescription, but because it's all gone now I canceled the appointment.

Andrew, that would be the worst thing to do to someone with cancer. It would literally send more cancer everywhere.

Steroids can cause edema.

unfortunately my husband has no lymph nodes at all in his neck. He now has a hospital bed and I find if he doesn't move around alot during the day, the lymphedema is reduced. Does this make sense?

Lymphatic massage doesn't spread it around. "Cancer may spread (metastasise) into the lymphatic system via the lymph nodes, or it may start in the lymphatic system itself. However, the circulation of lymph � from massage or other movement � does not cause cancer to spread. Researchers have shown that cancer develops and spreads because of changes to a cell�s DNA (genetic mutations) and other processes in the body."

A friend of mine does this type of lymphatic massage, predominantly for breast cancer but it works fine around the neck too. It is very gentle, like stroking a new born's head. Its not hard to do yourself, its similar to stroking an imaginary beard. I'd recommend finding someone qualified to tell you where all your nodes are and which way to stroke.

My Mothers Oncologist sent her to a Rehabilitation after her Mandibular surgery because of the swelling. Lymphatic Massages were done and it did help bring the swelling down some. My mom also takes a steroid pill everyday.

She also noticed when she walked around the swelling would go down but as soon as she got back in the bed the swelling would come back. When she wakes up in the morning its the worst.

Like OzMojo said the massages has to be done very gentle. I watched it being done to my mom and I tried doing some at home for her.


Good Luck
Heidi

[quote=missyp]unfortunately my husband has no lymph nodes at all in his neck. He now has a hospital bed and I find if he doesn't move around alot during the day, the lymphedema is reduced. Does this make sense? [/quote]

Yes, it makes sense to me. With lymph nodes removed, the fluid that would drain from gravity has no place to go.

Dave, squamous cell carcinoma travels via the blood and lymphatic fluid. With active cancer, any massage near the cancer can cause metastases, in theory. The American Cancer Society and Cancer Research UK suggest it isn't a good idea and they include other health conditions, like heart issues. Before any massage here, you are supposed to declare all medical conditions. I don't believe you will find a doctor that suggests it here, until declared NED, but I'm sure you could find a massge therapist and even one with advanced training that would perform MLD. There has been more research in this since I was treated, but I, personally, would not do it if my cancer was active unless I was in great discomfort and was under hospice care or didn't expect to be cancer free. We all take on risk, this just isn't one I would take on.

I don't know what level of activity is appropriate now, but it's believed that yoga may help with lymphdemia, as well as light exercise, such as walking, swinging arms above shoulders help with the lymphatic flow. There are more intense activities like swimming, using a trampoline, sauna, and just sweating for those medically and physically capable that are beneficial too.

This question has been asked here before, and elsewhere, with mixed responses about using massage, MLD, to help with neck lymphademia, which can eventually lead to fibrosis if it persists. Some had approval from their doctor, possibly post treatment, or even during treatment, while others have said to waited until declared NED, had your doctors approval, which was my understanding also. Information on this is conflicting, as mentioned above, depending on who, and where it comes from.

I was also concerned with breaking a tumorous cervical lymph capsule besides it spreading via the lymph, blood system as cancer can spread via tissue too. When I was going through my first radiation I kept checking the enlarged lymph, physically showing my RO, and she suggested I leave it alone. I never asked why, but got the message. Later I was concerned more with the carotid artery, having it previously scraped during surgery, along with multiple neck dissections, radiation treatments, and the risk of carotid artery rupture or stroke by massage or manual manipulation, even chiropractor, so I never went for any type. I figured the only one touching my neck is my ENT, but my case may be more unique than others.

As far as lymph nodes, there are supposedly over 300 in the neck, most microscopic, and everyone is different in the amount, and location of them. I had multiple neck dissections, levels ll-V, three that were radical, and just about each time more lymph nodes were removed during surgery, so I assume they never do get them all, and others enlarge, but never asked my doctors about that.

As suggested, I think on should get clearance from their doctor(s), and use a licensed PT, massage therapist. I know the massage has to be done in a certain direction, some in circular motion, different pressure, depending on the area in the head or neck, and not all are the same, so I never did it on myself.