lymphedema after surgery

[chuckotheclown]

After RP 12/1/17 and 21 lymph nodes removed, my right ankle and leg swell. Anybody have treatment recommendations?

[Hazard]

Hi Chucko, after my RP (3.5 yes ago) I had lymph edema in the groin. My scrotum was as big as a big grapefruit and I had a saxophone penis (Google it). My sister in law who is an oncologist told me

- walk as much as you can.

- lie on your back and cycle as much as you can.

The lymph system doesnt have a pump so you have to pump it yourself. Luckily my lymphedema cleared up in a few weeks but it was very unpleasant and frightening so I recommend you get walking and cycling ASAP.

[j-o-h-n in reply to Hazard]

Saxophone penis? When I was younger I would have given up my first born for a sExophone penis. Ahhh but that was then....

Good Luck and Good Health.

j-o-h-n Tuesday 08/21/2018 11:05 AM EDT

[Hazard in reply to j-o-h-n]

After 15 months on zolodex I almost forget what sexophone is like 😣

[Ran2599dy]

The combination of pentoxifylline and vitamin E prevented radiation-induced lymphedema among breast cancer patients in a phase II trial in Sweden. Dr. Myers put me on pentoxifylline 400mg x 2 per day and Toco-Sorb x 2 per day along with lymphedema massage and it worked in about 30 days. If I remember right he takes this combination because he had the same problem

[chuckotheclown in reply to Ran2599dy]

Thanks! Been following Snuffy’s book.

[CalBear74]

Elevate the right leg at night with pillows. Try to get the right ankle at least a foot above your heart level. There are compression stockings sold which really work but are a nuisance to wear. If this is to be a chronic condition, there are beds sold which have auto-lift features for both head and foot sections of the mattress. It is much simpler than stacking pillows.

[chuckotheclown]

Thanks so much.

[Hidden]

Interesting....my husband has stage 4 prostate cancer, gleason 7/8, in lymph nodes. pelvic bone and retroperitoneal. He had radiation to the right pelvic bone and retroperitoneal. 2 weeks later his right thigh swelled. Did doppler, no clot. Oncologist says it is NOT lymphedema. Radiation oncologist said it is NOT lymphedema and not related to his radiation. No answers so far. Its been 3 weeks. Went to see a vascular dr. He says we need to do a venography. Next step now but so confusing. Leg has been raised for weeks now. I measure everyday...no decrease in swelling. No one seems to be able to tell us what is happening. Concerned too.