Facial LE

Lainey64

Hello, I am currently being treated for breast lymphedema that has occurred over 12 years since since my axillary node biopsy and lumpectomy. Over the last couple of weeks I've been waking up with a swollen neck, face and eyes. It's awful and I don't even want my husband to look at me. My LEPT recommend a neck/face garment to wear at night so I just ordered one hoping that will keep the swelling down. The weirdest thing is though, my therapist told me that this is very rare and she's never treated anyone with facial LE before. I've read enough about it to know it's real, but I was still a little puzzled because they're treating me like I'm some kind of anomaly. It's got me a little freaked out.

flashlight

Hi Lainey64, I have truncal lymphedema that went into my left shoulder and up the left side of my neck to under my chin. My therapist was able to get the swelling down in my shoulder which helped my neck and chin drain. Do you have swelling anywhere else? My MO orders CMP, CBC with diff and a lactate dehydrogenase every 3-months. Have you had any labs done to make sure it isn't anything else? Have you seen your MO to discuss this?

Lainey64

Hi Flashlight, funny you should ask about my MO. I actually have an appt tomorrow for chemo and labs. I was supposed to go last week but here in Texas we had a serious ice/snow storm that put the entire State out of working order. It's been stressful waiting for my appt. I have been more short of breath than usual and the excessive fluid is worrisome. Fortunately, I do not have swelling anywhere else. Back in 2019 my ankles were swelling and I had the shortness of breath. Turns out my lungs and heart were full of fluid and they put me directly into the hospital. I guess that's been in the back of my mind but so far my ankles are ok and the swelling in my face usually goes down by around midday. I spoke to my nurse today and she said they may due a chest xray tomorrow if necessary. I found a recommendation on here for a compression bra so I ordered that today along with the neck/face compression thing.

MinusTwo

Lainey - oh yes,haven't we been fun in Texas... Do I understand you're saying your swelling goes down mid day? Does that mean you are sleeping flat in a bed? Can you try sleeping in a recliner to see of that makes any difference? Glad you're getting in to see the doc. With the prior history of swelling & fluid I wouldn't wait.

Zillsnot4me

I get some swelling on my right side in my cheek but usually it’s just the left collarbone. I’ve had trunk since my liver rads and right arm/hand a year after mx.

I find pumping helps it the most, less salty prepackaged foods and more water! I can tell if I had ketchup the night before.

You’re not crazy. I hope it’s not anything serious and Also hope it isn’t LE. I know my current chemo makes me swell more.

Lainey64

MinusTwo - Yes, I've been sleeping flat and it does get better throughout the day. My husband just told me that my face looks better than it has in days. I think that's probably due to the fact that I saw my LE therapist this morning. I do have a recliner and am going to try and sleep in it tonight. I noticed that during the night I wake up occasionally from neck pain. My therapist told me that fluid can build up in the back of the neck and cause discomfort. I will let you know how it goes!

Zillsnot4me - Thanks for the tips on the foods. I have read that diet can play a role so i'm trying to watch what I eat. Being on chemo (Navelbine) presents its own challenges as far as what I want/feel like eating, etc. I have a Flexitouch Pump and use it daily but skipped today since I had MLD done by my therapist today. Sometimes I need a break from pulling out that "octopuss" as we like to call it.. lol

Lainey64

I slept elevated in the recliner all night. It definitely helped and I didn't wake up looking like a chipmunk but I don't know if I can do that every night. I hope my face/neck mask arrives soon I can try that out. Thanks for all of the tips!

MinusTwo

Lainey - how about a Styrofoam wedge for your bed? That's a fairly cheap accessory & the top half of you would not be flat. Or the extreme - a bed that the mattress can adjust like a hospital bed.

Hoping the face & neck mask works. Please let us know.

Edited to say - Zills, I agree about watching food. But I never thought of ketsup.

Lainey64

MinusTwo - Great minds think alike! I was looking online for something like you suggested "wedge" of sorts. I found mix reviews about it where some people complained of sliding down them down them during the night. So I splurged and ordered a Contour Backmax Form Wedge Bed from Amazon (it was a few bucks cheaper than the manufacturer's website). https://smile.amazon.com/gp/product/B000CA5AG2/ref=ppx_yo_dt_b_asin_title_o00_s00?ie=UTF8&psc=1

I also have back and shoulder pain so I hope this will help. I slept in the recliner again last night and it went well. Woke up with very little swelling. Yesterday was chemo so I worried I wouldn't be able to sleep well due to the steroids but a little "sleeping aid" fixed me right up and I slept a solid 7 hours.

MinusTwo

Lainey - following. Hoping things get better. Keep posting

flashlight

Hi Lainey, Did you have to have a chest xray? How is the facial swelling? Hope you are feeling better.

Lainey64

Flashlight - Yes, they did a chest xray when I went in for chemo on Tuesday. They said everything looked clear so that was good news. Gotta tell ya though, sleeping in the recliner is getting old quick. My wedge bed can't get here soon enough! Thankfully I have an appt with my LEPT this morning!

Thanks so much for your concern and well wishes! It means so much.

Lainey64

Hello everyone, I wanted to come back with an update on this issue that I posted about in February. I wanted to do this in case this information will be helpful to anyone else in the future.

Well, my facial swelling did not want to stop even after I purchased an adjustable base bed so that I could sleep somewhat upright. My blood pressure has been increasing and my LE therapist really freaked out when it was around 155/90 at one of my visits. I mentioned this to the LNP at my oncologist's office and she didn't seem to think it was a big deal. So I took matters into my own hands and went to a cardiologist. I told him about the high BP and my swelling. He sent me for an echocardiogram which came back fine so he put me on 2 BP meds. One of them is to help reduce fluid build up. I was finally able to see my Onc last month and he was not happy about my face swelling so he sent me for a CT angiogram to check for blockages and also withheld the steroid from my treatment. Well, I'm not sure if it's the BP meds or the lack of steroid, but the swelling is gone and my face is back to normal! I don't like getting chemo without the steroid because honestly that's the best part but I can do without if it had anything to do with the swelling. I still have the truncal LE and seeing my therapist for that but honestly don't think it's getting better. Well, at least I got one issue knocked out! Oh, and my BP is now clocking in at 130/78.

flashlight

Hi Lainey64,

Glad to hear you are doing well!! I'm glad you went to a cardiologist. The oncologist and their staff seem to brush off a lot of side effects as nothing. Mine did that with the Gyn and I went anyway. My truncal LE seems to go up and down. Good luck to you!!