Lymphedema

[RobinR]

I've just joined the group and don't see any recent posts regarding lymphedema. I was diagnosed with metastatic breast cancer that spread to my bones and had hip replacement surgery in August of last year and also radiation to my hip and femur. I've now developed lymphedema in my legs and just wondered if this has happened to anyone else. I am undergoing treatment at a lymphedema clinic but just thought if anyone has any tips about coping with all of this it would be appreciated. I am 61 and in the US.

[Tera987]

Yes, I have had it since the chemotherapy the first time around with breast cancer. 1-eat less salt

2-more greens

3- Lympodema massage therapist 1 time a week in summer when heat makes it worse.

4- walk perimeter of pool, and do all lymphatic excercises in water and out of water starting at neck all the way down to your feet.

5 take water pills

[RobinR in reply to Tera987]

Thank you Tara! My clinician just mentioned water therapy today so I may be doing that. I am on water pills now which has helped some with the swelling. Do you have to wear compression garments? I have the daytime thigh high stockings and the Velcro garment for nighttime and sleeping and it's kind of hard to get used to, but I know before long I'll get the hang of them!

[Tera987 in reply to RobinR]

Robin:

I do wear compression socks and have found compression like leggings in active wear that are shapers with three way triocot so, holds in tummy and thighs. They take long to put on so I feel I could not do the hose.

In addition at night I make sure my legs are quite higher than my heart. 2-large pillows48"x48" and stiffer medium fill.

[Tera987]

A fiend of mine has an entire body suit and the gauntlets for both arms and hands also.

[RobinR]

I just got measured today for compression garments for my left leg, so will be wearing them on both legs. I haven't had surgery on my breast yet but lymph nodes are involved so they are trying to keep the fluid away from my upper right side in hopes that I don't develop lympedema there. I have the thigh high for daytime and a thigh high Velcro garment to sleep in plus a Velcro boot for my foot. It takes about a half hour to get the nighttime one off and the daytime one on, but I am still working on flexibility in the right side after had the hip replacement so I'm believing that as I gain more flexibility and have more practice doing it things will go faster. That is just for one leg, so will be interesting to see about how it will go when I have to do both legs! Thanks so much for your info and reply! It helps to know I'm not alone in this journey! And it sounds like your friend really is going through it! I wish you both the best!

[Joan37]

I have only a slight bit of lymphedema, but it's due to melanoma surgery on my upper arm, as well as a sentinel lymph node dissection (and the nodes were negative). But I recently read an article on cutting edge treatment for lymphedema, and I just posted the information and link.

[RobinR in reply to Joan37]

Thank you so much...look forward to reading it!

[Snaomi]

Hi Robin. Where are you in the US. I live in California near Sacramento. I have lymphedema in my legs since 2004. MLD and stockings are a must. I just had sapl surgery on my left leg and plan to do the other one in a year. Please keep in touch and let us know how you are doing. Sending hugs your way.

[RobinR in reply to Snaomi]

I am in Ohio! I just got the compression garments for my left leg so now have them for both legs and am meeting with a lady tomorrow regarding possibly getting a pump. I will post more about the pump once I meet with her. Do you have to wear the Velcro garments at night? Since you are in California I just wondered how they are in hot weather. I moved into my apartment in December and it has one wall unit In the living room that is supposed to cooI the entire apartment but I won't know for sure how well it cools until it gets warm enough to use it! Just seems like the Velcro garments will be very warm if the apartment doesn't cool down in summer!

[Snaomi in reply to RobinR]

I tried the velcro but they didn't work for me and my therapist didn't like them for me either. Yes they are warm as well.

[RobinR in reply to Snaomi]

I guess I'll just see how it goes since I am just starting to use the Velcro! Do you wear the daytime compression garment 24\7?

[Snaomi]

I have heard that taking water pills is one of the worst things you can do. But the water and less salt are definitely steps in the right direction

[RobinR in reply to Snaomi]

I think the thought was that since fluid starting going from my right leg to my left leg of I took water pills it might help remove the fluid before it moved to the left leg. So far it seems to be working as my left leg remains smaller than the right leg now. My doctor has only prescribed them for two months so we shall see what she thinks when this second month is up. Thank you for your encouragement! I don't really know anyone who has lymphedema in their legs so it helps a lot knowing I can communicate with you and others!