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Help with lymphedema please

Kathleen808's picture
Posts: 2361
Joined: Jan 2009

Hi Friends,

Dick has been out of the hospital for a month now and he is feeling stronger every day. He is going to the gym for a lighter workout and gaining some weight back.
However, he is having some bad lymphedema in his right leg and today it is in his left leg. He has been seeing a pt who has some experience with lymphatic message and he is doing lymphatic message on himself 3 times a day. It is better than it was but is still really frustrating because it appears to be progressing. Dick had numerous lymph nodes removed 2.5 years ago on his right side.
He saw his oncologist today and all his blood numbers are good including his CEA which is down to 1.9 (the highest his CEA has ever been is 4.7 and that was in September when we saw some spread and switched chemo). He is off all pain meds too. His onc said he was concerned that it might be more cancer in the lymph nodes and wants to scan after Christmas, in January.
For those of you who have had lymphedema can you please share your information? Did it ever improve or just get worse?
Thanks for everything.


Lovekitties's picture
Posts: 3341
Joined: Jan 2010

I have no personal experience with this problem, but have heard others discuss it.

Compression knee socks are used by some.  This helps to keep the fluid from pooling in the legs.

Elevating and keeping the legs straight when sitting also helps to keep it moving upward rather than downward.

The massage therapy is also a good thing to do.

Has the doctor not given him anything, even a diuretic, to help prevent the accumulation of fluid?

All these things are just to help alleviate the swelling in the legs and do not address the cause.

Wish I could be more helpful.

Love and hugs to you and your family,

Marie who loves kitties

fatbob2010's picture
Posts: 467
Joined: May 2012


I have no personal experience with this ailment.  I sounds that you are both being agrressive in everyway you know how.  The scans after Christmas my be helpful for the doctors to diagnose his ailment properly.

Hugs of Hope


LAckerm1's picture
Posts: 15
Joined: Mar 2011

Hi Kathleen--You need to elevate the foot of your bed 6-12 inches and he should do ankle pumps as many times a day as he can.  Also, compression hose help--He should use them if you travel or fly any distance.  I work with Lympedema patients and do massage and exercises with them through our therapy office in Cleveland.  Hope this helps.

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