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Topic: Summer! Ain't it just SWELL?

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Jun 4, 2006 05:26PM

Binney4 wrote:

Hi, all,
Just thought I'd post a few of the hot weather LE tips from the Natonal Lymphedema Network so we can all play it safe this summer. (Those of you in Australia, try not to gloat!)

We need to limit our outdoor time in the hottest part of the day, and if we do get overheated, to cool our whole body as soon as possible (ahh -- nice cool shower, or a dip in the pool). Or you can cool your affected arm by wrapping it in a cool damp towel and elevating it. (Okay, or ONCE IN A WHILE you can run your arm, with the sleeve and glove on, under a nice cool faucet and sorta pat it dry with a towel -- feels great! Don't do that often, or at all if it's so humid that it doesn't dry in a reasonable amount of time -- fungal infections we don't need!)

Avoid putting insect repellent on your skin and then wearing a garment over it. Instead, wear a long-sleeved shirt if you're going to be out when the nasties are biting. For insect bites, prompt treatment with a benadryl or hydrocortisone cream (or one containing aluminum sulfate) will lessen the swelling effect. Then wash and dry and apply antibiotic cream, just like any other break in the skin.

We don't want sunburn, so we need to use a sunscreen. And you know that thick, opaque fabric our sleeves are made of? Well, there's no guarantee it will protect us from sunburn, so by all means protect that arm with sunscreen as well. (And for us rads ladies, remember our radiated skin remains especially susceptible to the sun.)

Swimming is great exercise (not recommended: the butterfly stroke), and you may not need a compression garment in the water, as the water itself provides pressure. (If you do, you can wear an old garment while swimming.) When we get out, though, we need to dry off and put our garments back on promptly.

Traveling is always an adventure, and LE makes it moreso. Sleeves and gloves are great for prevention when flying, but most of us who already have LE find wrapping a better option. Leave it wrapped after landing for an hour or so. And don't forget exercising your arm at intervals throughout the flight, staying hydrated and avoiding caffeine, and being careful not to jerk luggage around (wheels are good, and pushing it is even better than pulling.) Andy, our all-time frequent flier record holder, finds that with her wrapped arm there are plenty of offers of help with her luggage -- nice! (If you wait to retrieve your luggage from the carousel until the crowd has thinned, your arm is less likely to be bumped and shoved.)

Going by car requires some adjustments too. If you're driving very far you'll want to wrap, and when you're not driving try to elevate your arm. Use air conditioning to avoid overheating. Exercise frequently and stay hydrated. On our last longish car trip I used my night garments instead of wrapping and found it easier (and even weirder-looking for the gawking public at rest stops and restaurants.) My therapist suggested that if the night gear was not enough I could wrap over them with just the short-stretch and leave off the gauze, foam and stockinette layers.

Which brings us to the topic of packing along supplies: bring enough. I've seem recommendations to bring along a prescription for antibiotics in case of emergency, but if you're going out-of-state I don't think that'd work. My onc has insisted all along that I keep a supply of antibiotics on hand at home, and traveling is no different. You can talk that one over with your therapist and medical team and decide what'll work best for you. At any rate, we don't want to take any vacations from vigilance, as an infection can quickly wreck all our plans.

Okay, that's a start. What other tips do you all have that work for you?

Hope your summer is restful and refreshing. (That goes double for those of you still in bc and LE treatment. Hang in there -- next summer's gonna be terrific!)
Binney Log in to post a reply

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Jun 4, 2006 06:29PM DoreenF wrote:

Binney... Thank you for all the wonderful summer tips...
last year at this time I was recovering from my hysterectomy and getting ready to start rads... then my LE was diagnosed right after the 4th of July ... so this is my first summer wearing LE garmets... so - between the hot flashes and being hotter from the garmets ... its' going to be a HOT summer... I'm happy I live in the mountains and not down in the valley where it gets to about 110 degrees in the summer. I'd be miserable...
Hugs,
Doreen
"Cancer May Leave Your Body, but It Never Leaves Your Life" - Lance Armstrong Foundation Manifesto. Dx 4/18/2005, IDC, <1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Jun 4, 2006 07:25PM rhymeee wrote:

Binney, thanks for that great post ! Very informative.

What antibiotic do you keep on hand for " just in case " ?

Thank you
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Jun 4, 2006 07:45PM Hattie wrote:

Thanks Binney. Is it no breast stroke as a precaution also, not just as a possible aggravation? Why can't the sleeves and gloves make a fashion statement? I see no reason for the lack of chic there. What gives?
Take care,
--Hattie
life is good
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Jun 4, 2006 08:01PM DoreenF wrote:

the sleeves and gloves can be a fashion statement .. if you get the Colored ones...

Today I went to the grocery store .. this little boy of about 4? was pushing one of those tiny kid sized shopping carts .. I told him he was a great helper .. he looked at me -- jabbered a bit (I had no idea what he said) and then he asked me what I had that thing on my arm and hand for... I told him it was Yukky and I had to wear it.
He was sooo cute. It's surprising - I've had people not notice it at all ... and then others that ask within 30 seconds...
I just wish they looked nicer and were not quite so hot.
Hugs,
Doreen
"Cancer May Leave Your Body, but It Never Leaves Your Life" - Lance Armstrong Foundation Manifesto. Dx 4/18/2005, IDC, <1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Jun 4, 2006 08:58PM Binney4 wrote:

Hi, Hattie,
Breast stroke is fine either way -- it's the butterfly stroke that's not recommended. And yes, I'd guess that would apply to prevention as well. (Actually it's sort of ironic, isn't it, since the butterfly is the symbol for LE.) Are you a butterfly-stroke fan? If so, I'm sorry to be the bearer of sad tidings. I suppose the problem is that that particular stroke is so much like a contact sport -- rugby, maybe!

Believe it or not I have actually had my sleeves/gloves mistaken for a fashion statement! (They are the colored ones, and I have them on both arms, so it could look like something deliberate I suppose -- weird but deliberate.) It was at a luncheon at a big hotel. Eight ladies to a table, the usual female chatter, and all of a sudden the woman next to me leans close and, in a practically conspiratorial tone says, "Would you mind telling me where you got those great gloves?" Dead serious. There are no fingertips in these gloves, mind you. I'm not sure what she was thinking of, but it was all I could do not to burst out laughing.

(You want to know what happened, though? I told her, in the same conspiratorial tone, what they were and how it happened I was wearing them. And she started to cry. She was just starting treatment for bladder cancer and feeling fairly hopeless. So of course we had a good cry together and a long hug, while the other six women at our table tried nobly to go on as though none of it was happening. Oh, strange!)

Anyhow, yes, Doreen, I hear you! People sure are interesting! One kid of about 9 came up to me in a restaurant and said, "So, what's going on here?" Took me a minute to figure out he was talking about my arm. I explained it to him and he told me quite solemnly that sharks never get cancer. So there you go -- learn something new every day!

Binney
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Jun 4, 2006 09:06PM rhymeee wrote:

OMG! how cute .

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Jun 5, 2006 04:41AM DianaMarie wrote:

Ok, quick question. I'm going to Hawaii in July and the flight is an 8 hour flight. I only had SNB and they came back negative. Do I need to wear a compression sleeve while flying? I really didn't think about it until I saw a posting by Binney.

Thanks,
DianaMarie
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Jun 5, 2006 11:27AM andys wrote:

DianaMarie,
There are conflicting theories about compression garments if you don't already have lymphedema. The latest thinking seems to be that you shouldn't need them. What a lot of folks are doing now is getting measured and purchasing le garments as a precautionary measure, taking them with them on trips that involve long flights or high altitudes, or other "risky" stuff. Then, if you do wind up being one of the unlucky folks who have trouble, you will have the "equipment". It could be rather costly though - if you aren't diagnosed with lymphedema, insurance won't cover the cost, and if you need custom garments, it could run you several hundred dollars. The one thing most experts seem to agree on is that badly fitted garments do more harm than good. Also, most agree that you shouldn't wear a sleeve unless you are also wearing a glove. Sorry I can't give you a more definitive answer.
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Jun 5, 2006 03:41PM sherry7 wrote:

Binney, I am interested in the colored sleeves and gloves. could you possible give some generic pricing. At this point I don't wear custom garments. I went and saw all the colors, this could make me feel better at times to have a little pastel or black for dressed up, I really don't appreciate the manican look.....love ya, Sherry

let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+
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Jun 5, 2006 03:55PM Binney4 wrote:

Hi, Sherry,
I don't know the pricing, but do call them and ask: 1-800-421-5647. (They're in Phoenix, which this time of the year is on Pacific Time.) Talk to Lari-Ann or Kara. The colors do make me feel better, no question. I got black last time I ordered and I like the look real well. If you find out what their over-the-counter garments cost, do post it here so we'll all know -- can't "comparison shop" if we don't have anything to compare. Good luck!
Binney
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Jun 5, 2006 04:00PM NPat wrote:

Binney,
Adrienne also suggested that I could wear my Opera with both compression pow-her sleeves over it if I flew. I understood that I would just slip it over my garment.

Sherry,
Bio-Concepts makes only custom garments... right, Binney? But the pricing is less than my first set that was ready-made. I think the cash cost for mine (no insurance or 3rd party involved) is ~$150 for glove/sleeve. I have to use a DME company so multiply that by 100% due to all the extra paperwork. They deserve that mark-up because dealing with my insurance is mind boggling.
Pat
NPat
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Jun 5, 2006 09:18PM Binney4 wrote:

Actually they do have a ready-made line as well. Here's the web page for it (which is geared to therapists rather than us gals!):
http://bio-con.com/readymade.html
Now I'm really curious about the prices...!
Binney
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Jun 17, 2006 03:56PM catty324 wrote:

Thanks for the tips. I read them earlier, but we are leaving for the beach on Monday and wanted to double check them. I do not have lymphedema but do take precaution. Had 24 nodes removed August 4, 05. Thankful they were negative. Anyway, thanks for the information and hope you are enjoying your summer.
tabbi
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Jun 20, 2006 03:37PM Hattie wrote:

Oh boy, LE is just like the rest of bc--nothing black and white (except my wardrobe!). My PT says wear a sleeve on long flights or at high altitudes just in case--costs about $50 bucks for a noncustom sleeve.

Am not found of butterflly stroke but like the breast stroke ok.

Some Hollywood actresses are wearing fingerless gloves--Binney, you're part of a hot new trend--maybe you started it!

Take care,
--Hattie
life is good
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Jun 22, 2006 04:31PM rosieS wrote:

Hi Binney, I have a question for you. I do not have lymphedema presently, but I did have a mastectomy (Dec 04) with 17 nodes removed on my left side. I got a few bug bites today--probably mosquito bites--they are small and are not bothering me. My question is -- do I need to worry that these bites can cause lymphedema?? Or do you just worry if you already have lymphedema? They are not infected, they are just there.

Thanks for any insight you can provide!
Rosie Dx 11/11/2004, IDC, 1cm, Stage IIIA, Grade 3, 9/17 nodes, ER+/PR+, HER2-
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Jun 22, 2006 06:22PM Binney4 wrote:

Hi, Rosie,

Here are the National Lymphedema Network recommendations for insect bites on an at-risk arm, with or without lymphedema (LE):
Treat bites immediately with benadryl or hydrocortisone creams (or an ointment with aluminum sulfate as the active ingredient) to counteract the histamine effect (that is, to keep it from getting all red and itchy and puffy, which will signal your lymph system to send extra lymph fluid to the area). Then treat it like any break in the skin on an at-risk arm: wash and dry completely, apply antibiotic cream. And of course they recommend using a good insect repellent or protective clothing.

It'll help not to scratch at them if they get itchy, of course, because you don't want to irritate your skin further.

So, yes, insect bites on an affected arm create a risk for LE. But certainly not a guarantee, so just keep an eye on it but don't fret about it.

Have a great summer, Rosie, and be well!
Binney
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Jun 23, 2006 05:48AM inspiewriter wrote:

Avon's Skin so Soft is great protection for bug bites!!!

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