Ideas for Living with Chest Wall Lymphedema?

Replies to This Discussion

Permalink Reply by Kris on October 5, 2008 at 1:45pm

You're definitely doing all the right things. And I think the rebounder will really work for you. I was having problems with my arm until I got mine. Now I don't wear my compression sleeve at all, not even for flying or working out.

Several months ago, I was doing some internet research and found a site with some holistic suggestions for lymphedema (I don't recall now what the site was). I recall them recommending pancreatic enzymes, so you might want to try those also. They have lots of other benefits for people with cancer so they're worth taking.

▶ Reply to This

Permalink Reply by Cindy on October 5, 2008 at 1:51pm

Oh, I'm so glad to hear that you are compression free! Ok, I'm going to use the rebounder religiously then. And I'll look into the pancreatic enzymes. Thanks very much!!

▶ Reply to This

Permalink Reply by Kris on October 5, 2008 at 4:14pm

Start slow on the rebounder, like a few minutes at a time throughout the day. My arches hurt at first. Wearing shoes does help but I prefer to do it barefoot or in socks simply because I do it frequently throughout the day and got tired of putting on and taking off shoes. If your feet or arches do start to hurt, rub them with a tennis ball or something similar. That really helps.

Good luck! Hopefully that sleeve will become like mine, something you run across in a drawer every once in awhile.

▶ Reply to This

Permalink Reply by Cindy on October 6, 2008 at 12:29pm

Thanks, Kris, for the great advice. Fingers crossed for both of us!

▶ Reply to This

Permalink Reply by REO on October 5, 2008 at 2:33pm

Hey Cindy!

I think the rebounder is really going to help.

If you can, walking is also a great exercise to get the lymph fluid moving.

Wishing you a great Sunday.

Keeping you in my thoughts and prayers.

Love & Huggs!!! :)

Ron

▶ Reply to This

Permalink Reply by Cindy on October 5, 2008 at 3:13pm

Thanks, REO. I will keep up the walking. (I don't know about you, but I find that walking is good for both body and mind!) Sending joy your way. Happy Sunday! My best, Cindy

▶ Reply to This

Permalink Reply by carolyn on October 5, 2008 at 4:41pm

look up a Dr. Foldi on the internet. he pioneered the lymphatic massage therapy in use today. you must take it very seriously. my friend had lymphedema in his left leg and the hospital would not treat it. we call lymphatic massage therapists and they wouldn't go into the hospital for legal reasons. i kept saying the he would eventually get gangrene. 4 months later, he did

▶ Reply to This

Permalink Reply by Cindy on October 6, 2008 at 12:29pm

Thank you, Carolyn. I'm sorry to hear about your friend.

▶ Reply to This

Permalink Reply by genie on October 5, 2008 at 6:00pm

Have you heard of the lymphatic therapy done with a machine called the Light Beam Generator? It uses light and oxygen to pump the lymph. I've had great success with it for lymphedema in my leg (post-hysterectomy). In my case, I can actually see the fluid being pumped out during the course of the treatment -- my toes get that shriveled "swimming pool" look, and when the treatment is over it's right to the bathroom for me.

This therapy is often called LBG and I'm sure you can get info about it on the internet.

▶ Reply to This

Permalink Reply by Cindy on October 6, 2008 at 12:30pm

Thank you, Genie. I appreciate it. I'm glad you've found something that works so well for you!

▶ Reply to This

Permalink Reply by Diana on October 6, 2008 at 1:13pm

Well, finally someone who can understand lymphedema !! I have been dealing with it for over 10 years and it just got worse this last reoccurence two and a half years ago. My lymphedema is from the waist down both legs and anything in the middle (if you know what I mean). It started with my right leg where the Melanoma started and then got worse when it came back but further up the right leg (which meant more surgery to remove more of the lymph nodes which this cancer was traveling) but this last time it went into the upper right groin and over to the left groin and above so they had to get radical and did a superfical groin dissection on the right like I said ten years ago but now it traveled to the upper groin so they did a deep groin dissection right side two years ago( terrible surgery) and since it was over on the left they had to do a superfical (which is more or less groin area and down), but while in they saw something and did a deep dissection at the same time, which meant I woke up with an incision from above my knee to my belly button. I almost shit when I saw that. Plus it was only 4 weeks since I had the right deep dissection. Well needless to say they removed all the lymph nodes they could see and then I had to make the choice on radiation to kill any cells and lymph nodes too small to see but could carry the cancer. So I said yes. One Dr said no to the radition cuz I would end up with elephant legs (very rude man) little did I know that it is a real f----- thing. So Here I am in compression hose from toes to under my bra!!!!! Every day I wear the hose all custom made, and at night I wear something like snow pants from toes to hips. I can no longer work, have to TRY to stay off my feet. I look like a umpha lumpha (from willie wonka). But my Dr say look at it this way Lymphedema (you live) Cancer (you could die). which is the better??? So I live with this everyday. I told my lymphedema therapist (her name is Tara so when I say Tara thats who she is , she is also my friend)I think more about the Lymphedema then the cancer. They explained it's becauseI have to deal everyday with getting up putting all the armor on and not working and my whole life changed due to a disease hardly anyone ever heard of called LYMPHEDEMA! "HAVE YOU GOTTEN "WHY DON'T THEY JUST DRAIN IT?" I hate that one the most. It took me eight years and Tara to understand the complex ins and outs (pun) of the lymph system. I respect it now and fear it al;ittle too. But my God I am pleased to have another person to talk with. I know I went on about me but I wanted you to know alittle(and I mean that is just a little) of me understanding Lymphedema. So I look forward to hearing from you. In fact I am writing fast cuz I have to go see Tara (my lymph girl) now. Then if you write back I can talk to you like a sane person. I just wanted to get this out to you so you know we are out there. Peace Diana

▶ Reply to This