What I learned at the lymphodema therapist this morning...

lindaprocopio

I almost felt silly going in to see the lymphodema specialist this morning, as my ankles look almost normal with both bones visible on each. But she still took me seriously and spent an hour and a half with me and taught me a lot. It is really best to meet with a specialist as soon as you start getting that 'heavy leg'feeling at the end of the day and have even modest swelling. She measured my calves and the one where the ankle sometimes swells is 1 cm larger than the other. She confirmed that the slight swelling I get on my pelvic mound is indeed lymphodema and that this is a common place for swelling with gynecologic cancers. She surprised me by suggesting that really tight bicycle shorts or tight Spanx under your clothes are the best therapy for that area of lymphodema swelling and even made me 3 custom pads to slip over that area to apply even more pressure on the area that is swelling. (I was under the misconception that loose pants that do not bind were best, totally wrong). She looked at all of the compression socks I'd bought (which she'd asked me to bring along) and showed me that I was pulling them up too far. Apparently lymph fluid can collect on the inside edge of the knee and so I need my socks to either go completely OVER the knee or ride under it. She liked the idea of me wearing compression panty hose and had me try on the pair I'd bought but never worn. She said what I am using is clearly working for me, and that I could always go up a strength or wear 2 pair if I was going on a long flight or planning to be on my feet all day. I don't have to go back to her again at all, so I've been doing something right. She said that I should rock my feet back from the ankles as a habit all day and that walking was wonderful for lymphodema. The only exercise she didn't want me to do was squat in the garden for long periods of time, and said I should sit on the ground and dig in the dirt as long as I wanted. We talked about comoression socks and Doxil. She said I may want to put my socks in the freezer before I wear them while taking Doxil, and may just have to NOT wear them during the 8 days right after each infusion when you are supposed to avoid friction and heat, and instead keep my feet propped up. She said many insurances cover the cost of compression wear and it's worth looking into. My lymphodema was never really bad and is so much better since I started wearing compression socks. These socks come in pretty patterns and colors and really look like 'trouser socks' and they make your legs feel so good. I originally bought a few pairs for my trip to Greece since I'd just finished pelvic radiation and had some ankle swelling. They made my legs feel do good that I came home and bought a dozen more pair and wear them all the time. But I was worried that these 'self-preescribed' socks might be doing me more harm than good, since I don't really know what I'm doing, so that's why I went today. Do any of you other ladies that had the pelvic radiation or lots of lymph nodes removed have any lymphodema? (I had 25 nodes renmoved with my surgery.) Since my cancer recurred in my lymph nodes, I especially wanted to make sure I was dealing intelligently with my very compromised lymph system. I hope this information helps someone else, too.

Ro10

Linda as usual you are a wealth of information
You certainly shared a lot of good information in your post. I had 21 lymph nodes taken out and also had the pelvic radiation. I have been fortunate to not have the lymphedema.
When I took my long flights I did wear TED hose (conpression stocking like they give you in the hospital).

I thought that was interesting about the recommendation to put the stockings in the freezer while taking Doxil. I know the hand and foot syndrome is what Sharon and Diane had talked about.

I am glad that your swelling is better. It will be great to have this information later if I need it. Thanks for sharing. In peace and caring.

cleo

Ro10 said:

Linda as usual you are a wealth of information
You certainly shared a lot of good information in your post. I had 21 lymph nodes taken out and also had the pelvic radiation. I have been fortunate to not have the lymphedema.
When I took my long flights I did wear TED hose (conpression stocking like they give you in the hospital).

I thought that was interesting about the recommendation to put the stockings in the freezer while taking Doxil. I know the hand and foot syndrome is what Sharon and Diane had talked about.

I am glad that your swelling is better. It will be great to have this information later if I need it. Thanks for sharing. In peace and caring.

Lymphedema
Hi Linda, I hope that she also showed you how to self massage as that stops the lymph from settling and takes very little time for good results. Celia

Cecile Louise

Thanks!
Linda, thanks SO much for sharing this. I also had 25 lymph nodes removed. My ankles swell, sometimes worse than others, but almost always to the point of not being able to see the bones by the end of the day and the swelling of my pelvic mound - well, I thought that was just fat. I get that "heavy leg" feeling everyday, usually starts in the early afternoon. I, too, have been reluctant to talk to anyone about this as I've seen some people with lymphodema so bad they can hardly move and felt that mine was so minor it wasn't worth worrying over. You've inspired me to talk to someone about this. You are such an intelligent, caring & lovely person - I am so thankful for all you do for us here.

Love,
Cecile

lindaprocopio

Cecile Louise said:

Thanks!
Linda, thanks SO much for sharing this. I also had 25 lymph nodes removed. My ankles swell, sometimes worse than others, but almost always to the point of not being able to see the bones by the end of the day and the swelling of my pelvic mound - well, I thought that was just fat. I get that "heavy leg" feeling everyday, usually starts in the early afternoon. I, too, have been reluctant to talk to anyone about this as I've seen some people with lymphodema so bad they can hardly move and felt that mine was so minor it wasn't worth worrying over. You've inspired me to talk to someone about this. You are such an intelligent, caring & lovely person - I am so thankful for all you do for us here.

Love,
Cecile

I forgot to mention about skin sores with lymphodema
One other important comment the lymphodema specialist emphasized that I forgot to mention is how important it is to take any cut or injury to any areas with lymphodemic swelling seriously. She said if I get a little cut on my ankle and the next day it looks red or larger or swollen or if I run any kind of fever at the same time, I am to IMMEDIATELY get an appointment with a wound care specialist because any kind of injury to that tissue is apt to be difficult to heal and needs antibiotics and professional help and not to mess around or take a wait and see attitude.

Cecile, you'll want to try some compression socks, they help so much alleviating that heavy leg feeling. Lymphodema isn't really reversable but it can be kept at the very early stage like you and I have, and won't get progressively worse, if you start wearing compression socks and keeping it under control now.

She did briefly show me the massage technique, which is a tiny little pat-pat pressure upward with no stretching of the skin by pulling upward on it in any way. She has her patients with full blown lymphodema come in daily for her to do the massage, because apparently you can do damage to the skin if you do it wrong. If my lymphodema gets worse I will go back to her and really learn how to do it. Right now the socks are doing the trick.

bea-mil

lindaprocopio said:

I forgot to mention about skin sores with lymphodema
One other important comment the lymphodema specialist emphasized that I forgot to mention is how important it is to take any cut or injury to any areas with lymphodemic swelling seriously. She said if I get a little cut on my ankle and the next day it looks red or larger or swollen or if I run any kind of fever at the same time, I am to IMMEDIATELY get an appointment with a wound care specialist because any kind of injury to that tissue is apt to be difficult to heal and needs antibiotics and professional help and not to mess around or take a wait and see attitude.

Cecile, you'll want to try some compression socks, they help so much alleviating that heavy leg feeling. Lymphodema isn't really reversable but it can be kept at the very early stage like you and I have, and won't get progressively worse, if you start wearing compression socks and keeping it under control now.

She did briefly show me the massage technique, which is a tiny little pat-pat pressure upward with no stretching of the skin by pulling upward on it in any way. She has her patients with full blown lymphodema come in daily for her to do the massage, because apparently you can do damage to the skin if you do it wrong. If my lymphodema gets worse I will go back to her and really learn how to do it. Right now the socks are doing the trick.

lymphedema

"Post-cancer surgery lymphedema patients who experience a sudden marked increase of swelling should immediately cease treatment and be checked by their physician for possible recurrent tumor or disease. Tumor growth can block the lymphatic flow causing a worsening of the condition. Although not yet proven in a controlled clinical study, many lymphedema specialists believe that patients with recurrent or metastatic disease should not undergo Complete Decongestive Therapy (CDT) in order not to promote the spreading of the cancer. Be sure to discuss this treatment with your doctor."

"The Complex Decongestive Therapy (CDT) methods consist of: a) manual lymphatic drainage; b) bandaging; c) proper skin care & diet; d) compression garments (sleeves, stockings, devices such as Reid Sleeve, CircAid, Tribute, as well as other alternative approaches); e) remedial exercises; f) self-manual lymphatic drainage & bandaging, if instruction is available; g) continue to follow prophylactic methods at all times."
http://www.lymphnet.org/lymphedemaFAQs/overview.htm

cleo

bea-mil said:

lymphedema

"Post-cancer surgery lymphedema patients who experience a sudden marked increase of swelling should immediately cease treatment and be checked by their physician for possible recurrent tumor or disease. Tumor growth can block the lymphatic flow causing a worsening of the condition. Although not yet proven in a controlled clinical study, many lymphedema specialists believe that patients with recurrent or metastatic disease should not undergo Complete Decongestive Therapy (CDT) in order not to promote the spreading of the cancer. Be sure to discuss this treatment with your doctor."

"The Complex Decongestive Therapy (CDT) methods consist of: a) manual lymphatic drainage; b) bandaging; c) proper skin care & diet; d) compression garments (sleeves, stockings, devices such as Reid Sleeve, CircAid, Tribute, as well as other alternative approaches); e) remedial exercises; f) self-manual lymphatic drainage & bandaging, if instruction is available; g) continue to follow prophylactic methods at all times."
http://www.lymphnet.org/lymphedemaFAQs/overview.htm

Lymph
I was also told not to have hot baths and when I go to a swimming pool not to sit in the sauna or the lovely hot whirlpool! Hot sun is also a no apparently...consequently with the stocking off I have one brown leg and a very pasty one....not a pretty sight!! But, in the scheme of things that's a minor.

Double Whammy

cleo said:

Lymph
I was also told not to have hot baths and when I go to a swimming pool not to sit in the sauna or the lovely hot whirlpool! Hot sun is also a no apparently...consequently with the stocking off I have one brown leg and a very pasty one....not a pretty sight!! But, in the scheme of things that's a minor.

How do you know?
if it's lymphedema or swelling from other problems? I've previously had ankle/foot swelling in the summer,am hypertensive and occasionally retain fluids. It's summer and I have had some swelling since surgery for a few days when it was really hot. I had a total of 17 lymph nodes removed and was told I would have no problems. So how would I know?
Suzanne

lindaprocopio

Double Whammy said:

How do you know?
if it's lymphedema or swelling from other problems? I've previously had ankle/foot swelling in the summer,am hypertensive and occasionally retain fluids. It's summer and I have had some swelling since surgery for a few days when it was really hot. I had a total of 17 lymph nodes removed and was told I would have no problems. So how would I know?
Suzanne

Lymphodema swelling doesn't leave that white spot or indent.
Lymphodema swelling doesn't leave that characteristic white-ish dot when you press your thumb down on it and lift up,...like regular welling does, and it doesn't leave any kind of momentary indentation. If you get the compression socks in the lowest 'non-medical-grade' compression (like they sell as 'travel socks') and they make your legs feel better, that may be all you need regardless.

susafina

lindaprocopio said:

Lymphodema swelling doesn't leave that white spot or indent.
Lymphodema swelling doesn't leave that characteristic white-ish dot when you press your thumb down on it and lift up,...like regular welling does, and it doesn't leave any kind of momentary indentation. If you get the compression socks in the lowest 'non-medical-grade' compression (like they sell as 'travel socks') and they make your legs feel better, that may be all you need regardless.

Thanks for the info
Linda, as always you are a wealth of knowledge. I had 18 lymph nodes removed and have recently noticed ankle swelling and calf tightening after being on my feet at work for long periods. I saw a lymphedema therapist at discharge post surgery but forgot all about it. I even mentioned it to my nurse who really blew me off. You just openedd my eyes as to what it is. I should have known! How embarrasing. I have to get some of those compression socks and try them out. Thanks again for always being there to help us all out.
SUE

Ro10

lindaprocopio said:

Lymphodema swelling doesn't leave that white spot or indent.
Lymphodema swelling doesn't leave that characteristic white-ish dot when you press your thumb down on it and lift up,...like regular welling does, and it doesn't leave any kind of momentary indentation. If you get the compression socks in the lowest 'non-medical-grade' compression (like they sell as 'travel socks') and they make your legs feel better, that may be all you need regardless.

I was surprised to lymphodema does not indent
I have noticed my ankles being a little fatter, but not indentation when I press on them. I also noticed my sandals being a little tighter. So I started wearing my TED hose from the hospital. I noticed my ankles are smaller, so I guess I do have some lymphodema.
I wear the TED hose around the house and at night now. Thank you for the information.
Linda you are always a wealth of information.