Experiences with post-chemo edema? Suggestions?

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Location: Maryland, USA

Experiences with post-chemo edema? Suggestions?

Postby Jannine » Tue May 04, 2021 8:22 am

Hi all,

Three years ago yesterday I went into the hospital with a fever... and came out minus 10" of my colon a week later. It's easy to remember the date because I spent all day in the ER on day two, half-watching all the Star Wars movies. This place helped me get through the aftermath.

I still have neuropathy in my feet, which is annoying but I can live with it. A side effect I'm getting frustrated with is the edema in my lower legs and feet. My edema seems to be very variable, and I think I'm having trouble getting traction on figuring out what's going on with it because it does go away overnight, which I guess means I'm not in danger of permanent damage from it. (I would like to address it now so that it *doesn't* become a serious problem!!!) Also it isn't all that bad at the times of day that I see medical professionals; it's worst in the evenings, of course. It's visible and alarming to me, but not to anybody else. I would really like to understand what I need to do to more consistently manage it. I'm pretty sure I could largely address it myself, if I just knew what my body needed.

I did not have much problem at all with edema in the year or so between the end of chemo and the start of the pandemic; I think it's gotten worse because I'm not moving around as much, working from home. I now wear compression knee-high socks daily in weeks-long spurts when the swelling starts to get bad, and they do seem to help. But I didn't need to use compression with any regularity before the pandemic. I'm guessing that movement is the key.

I've had the swelling cause weird redness and scaly skin in my toes and, more recently, it looked like I had a rash on my lower left leg for days, above the ankle. (My left leg swells more, for some reason.) Consistently wearing compression socks for a couple of weeks makes the redness go away, so I've gotten to where I'm very attentive to what's going on with my feet, and I check them every morning and every night.

I've tried doing some research but I'm not really finding anything that's directly useful to me. Like, if I had some ideas I could try -- moving for x minutes/hour; moving for x minutes/day spread out over y # of activities; walking? Just getting my heart rate up? My doctor suggested elevating my feet, but it's hard to elevate my feet when sitting at a desk the whole workday. I have no idea where to start and what to try. Any ideas or suggestions?

Should I try checking in with a physical therapist? Or is there some other type of specialist who might be able to help me out and who won't pooh-pooh my "mild" symptoms?

I'm sure this is manageable, I am just at a loss on what to do, and not getting much interest from my Dr. on addressing it since it doesn't seem severe.

Thanks for any ideas you might have.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8
7/19 CT scan clear

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