Help with lymphedema please

[Kathleen808]

Hi Everyone,

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.

Aloha,
Kathleen

[PGLGreg]

I'm sorry I can't help, but I did have it, in my feet and ankles, over a year after chemoradiation. My oncologist did some tests but found nothing. After 3-4 months, it went away by itself.

[texazgal]

Was prescribed Lasix and and that took care of it.

[Kathleen808]

texazgirl,

Thanks for the info. Where did you have the lymphodema? How long did you have to stay on Lasix? Who prescribed it?

Thank you!

Aloha
Kathleen

[esk2poo]

Kathleen,
Sorry I cannot offer ny help but just praying for you and for Dick to get some sort of relief.
Good luck,
Allen

[Maia]

Kathleen, you may find some useful information in this thread, specially in surfingon's posts : viewtopic.php?f=1&t=32192

Sending my best wishes to Dick (and to you!)

[texazgal]

Kathleen, the edema was in both lower legs, feet and ankles. I changed PCP in August this year and she thought it was caused by the BP med I was taking(Nifedipin and HTZ) took them away and did Lasix ever since. We are still trying to find a good BP med that my insurance will cover and that works. So far, no luck. It was 208/100 yesterday, so she upped the dose. At my wits end, as I have had serious complications with many of the BP meds. I figure I will be taking lasix from now on or until my body develops an aversion to it.

[elise]

I use 30mmHg compression socks to help. Frustrating but if I let mine get bad it will irk my achilles tendonitis.