HOW YOU CAN COPE

Having a diagnosis of lymphedema is not fun.  And certainly not a bed of roses!  But it is not the end of the world!   And you can still take time to smell the roses!

Here are some tips from some of us "Swell Girls and Guys" who have worked our lymphedema and its treatment and  management into our daily lives, and still have a great quality of life!

Please click here, to read what Pat O'Connor (1952-2013) , My Life With Lymphedema has to say about your emotions and self image with lymphedema.

What to do While Waiting for Your First Appointment with a Qualified Lymphedema Therapist

DO NOT try and treat this yourself!!! Proper professional treatment is essential to getting control of lymphedema and preventing its progression. Treatment can be expensive and inconvenient, but this condition is life long, potentially disfiguring, disabling and possibly life-threatening (if you get an infection known as cellulitis) so professional evaluation and treatment as soon as possible is essential.

1) Get evaluated promptly by your doctor to rule out other causes for the swelling in your hand/arm, and get a referral to see a well-trained lymphedema therapist;

2) Drink plenty of fluids -- staying well hydrated helps dilute lymph fluid and keep it moving freely;

3) Elevate the swollen arm or hand as much as possible during the day and on pillows at night; support the arm well so that it doesn't tire;

4) Several times a day pause and do some deep breathing -- this helps stimulate the largest lymph vessels in your body;

5) Raise hands over head as high as is comfortable for you, three times a day, and pump fists 20 times;

6) Call for medical help immediately if you have severe pain, redness, fever or feel ill;

7) You can try mild compression gloves by either Edema Control Gloves, Imak, Dritz Crafters Comfort Gloves, or Isotoner® Fingerless Therapeutic Gloves if your hands and/or fingers are swollen until your appointment with your lymphedema therapist.  Be sure to bring them along to your appointment;

8) Do NOT use ACE wraps or any other wraps without the advice of your lymphedema therapist after your evaluation and your treatment plan is scheduled. 

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Handling the Lymphedema Diagnosis and Surviving the Intensive Portion of Treatment

• I developed lymphedema a month ago and have been so down. I have to say that reading about everything that must be done in order to control (not cure!) this thing has made me even more depressed. I'm usually not a whiner, but this thing has gotten me down even though the cancer never did. I got my sleeve and glove today - I hate them. I can't wrap my head around the fact that I will have to wear it every day from now on.  ARRRGGHHH! –Munchy

• I year and a half ago [when first diagnosed with lymphedema] I was in the same mind set as you. It sure is a bummer to have this life long challenge. I was so grateful to find I wasn't alone. No one in my tiny village who has had breast cancer had this "side effect", except one woman who really didn't want to talk about it. When I read that some Survivors have lymphedema in their leg I was sort of grateful it was only in my arm. I want to tell you it hasn't slowed me down. I'm off to Africa next month sleeve and all. Each day is a challenge but you know we're alive to tell our story and perhaps to be able to help someone else.  – msmarymac

• Trying to be positive is great, but it's okay to grieve, too. Lymphedema is a really tough diagnosis, and coming as it does after a battle with the breast cancer beast, it can really take our feet out from under us. Most of us have found ourselves floundering with this for a while -- grieving is hard work, and it takes time. Do be gentle with yourself! – Binney4

• It REALLY DOES get easier. Once you have the self-care skills of MLD massage, wrapping, exercise, and skin care, you can start to take control of your life again. Steep learning curve, but there's pride and hope in knowing you can manage this and deal with it on your own terms. You'll get there, and it'll be good! –Binney4

• Now that a little time has gone by, I have begun to make peace with this thing. Reading about and learning all I can about my problems is what I always do - it gives me some sense of control – so that is what I am doing. At first I was afraid that I would never be able to draw, paint or sew again - I do so much with my hands, and I am right handed (it's my right arm that is affected). But I have found that I don't have to wear the glove and sleeve every waking hour, and that's a big relief. A lot of my swelling is in my hand, so sometimes I just wear the glove. I have also been able to keep up my workouts - just keeping them more moderate than I'm used to (which is better than nothing, I guess). Now that the weather has cooled off, the swelling is a bit better. – Munchy

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Getting Through the Day with a Wrapped Arm

 

 

• I've been anxious to share this with you all but had to wait to get the apparatus from a large animal vet.  Didn't run in to a vet yet but tonight did run into a fellow who works at a cattle breeding farm.  The plastic gloves they use for doing "things" inside the back end of large animals (horses, cows) fit quite nicely over my arm with all the wraps.  It's so nice to be able to wash dishes (well not THAT nice) brush dogs, clean etc. without worrying about getting the wraps dirty or wet. They are disposable but fairly heavy plastic so could be used again and again for a while. It's wonderful to be able to brush dogs and not spend the next hour picking hair off the wraps. Anyone need their cow or horse examined? Hmmm, gives compression a whole new meaning. – Sharon51  These "palpitation" sleeves can be purchased at DVM360.

• Clothes over a wrapped arm can be a problem, especially in winter when jackets and coats make it awkward and drafty. A zipper-front sweatshirt works for me, but it doesn't get all that cold here. You can wear jackets and coats without putting your arm in the sleeve, but of course your activities are limited (to say the least!) Raglan sleeve blouses work well, or just full-ish sleeves. I have a few items I can wear, but a lot don't work with a wrapped arm. Stretchy fabrics do, as long as they're not so tight they bind anywhere. The awkwardness of wrapping 23/7 only lasts a few weeks, but it sure does seem like forever. When I was done with my therapy there were a couple of shirts I'd worn over and over that I never wanted to see again!

   

• Nightgowns -- you can find them with big full sleeves, but not easily. Or cut off the cuff if there's fullness in the sleeve but not in the cuff. I wore a t-shirt and 'jama bottoms during therapy, but now that I have to wear a full night compression vest and two sleeves, all I need to add is the bottoms. (Only, since I used to wear nightgowns, not pajamas, that's been a big adjustment.) – Binney

   

• I have been wrapping my arm every night and been using 3m tape to secure my short stretch bandages. This can run into a lot of money over time. Tried narrow masking tape from the $1 store and it works great. – Jinky

• If you use co-ban to wrap your fingers (instead of gauze), it's a whole lot cheaper to buy it from a veterinary supply store, where it's called vet-wrap and comes in a wide variety of sizes and colors. Also good for wrapping the doorknobs in your house if your gloves slip when you try to open them with a wrapped hand or compression glove. – Binney

• I used veterinary grade artificial cotton "rolls" last summer, which I got from the Vet I work for, instead of the Artiflex for use as padding between the stockinette & short stretch bandaging. It is the same quality but a lot cheaper. I stay bandaged more than most of our lymphedema sisters because of all the things I do here on the ranch & our unrelenting HEAT & I go through a lot of supplies none of which are covered by insurance. – Amryann

• I wear sweatshirts. I stretch the heck out of the wrists. And thankfully my husband never wore his sweaters; I now do. Not very fashionable, but warm. Lymphedema fashion in the winter is a challenge. In the summer I just wear sleeveless blouses. Winter is a whole other issue. And dressing up while wrapped. Well sheesh, how sexy is that? – Sharon51

• I saw a scarf just a couple of days ago that had pockets on each end. Hang it around your neck and the pockets were about hip level on both ends, and as wide as the scarf (maybe 10-12 inches), so plenty of room. If you knit, make a scarf long enough to fold up each end as deep as you want the pockets to be and stitch the sides in place. Another option, if you knit or crochet or have crafty friends who do, is to make "mitts" like you put on newborns, without the thumb. Elastic in the cuff (measured to go over your wrapping without constricting) would work to keep them on. – Binney

   

• If you have a few sewing skills you can also make a polar fleece scarf with the pockets like Binney suggested. The fleece is usually 60 inches wide.  Just purchase one-half yard of fabric and fold it in half, making the scarf 9 inches wide.  Sew up the "bottom" edges and about 6 - 8 inches up both sides. It does make a nice double-layer scarf. When you put it on, keep it folded in half with the fold against your neck and the ends hanging down like pockets.  It can be sewn on the machine or with a decorative hand stitch and embroidery floss.  You don't even need to hem the ends or sides.  -- lvtwoql

• I live in Minnesota where it really gets cold. I could never find a glove or mitten to go over my compression glove without pushing the fingers up and making it really uncomfortable. Without anything my fingertips turned purple, so I recalled years ago when they used to wear muffs. Only place to get them is the internet. Found one for about 30 bucks, tried it and love it. I can put both hands in and the other one helps keep the lymphedema one warm. May look a little funny, although I have had a few people say they wish they would come back in style. Don't see why it wouldn't work with a wrapped hand. The scarf idea sounds good too. Good luck in finding just the right thing for you. – bingbing 

• My lymphedema is in the upper arm & chest area.  Got a down vest from Lands End about a month ago and love it!  Very light weight and keeps me warm.  For sweaters, I find I have more room with a raglan sleeve rather than a fitted sleeve. - sisterinspirit

• Please also see our RIBP Page for additional Coping Tips when having compromised use of one hand/arm while wrapped.

• My therapist uses masking tape for bandages, can you believe it?  I'd have never thought of that, but have tried just about every other kind of tape- Sher

• My therapist recommends fleece fabric instead of the padding layer between the stockinette and short stretch bandages. This is purchased by the yard and cut in strips in the opposite direction of the way fleece stretches and then can be rolled up the arm like Artiflex or foam. She had some John Deere Tractor print, which got me to thinking that on sale or off season fleece could be purchased to save money.  Sher

• When I am wrapped and am around water I get an umbrella bag from Walmart  or Target and put it on my arm-they are in the foyer when you enter to  put wet umbrellas into. - BeckySharp

• Don't know what companies are charging for bandage rollers but they can be bought at any decent tack store (horse store) for $5.00 - $7.00.   (Leg warps are used all the time on competition horses so lots of bandages to roll.)--Kicks

• I had to wrap last winter for about a month. What got me through without freezing day to day was actually cutting the sleeve off an old zip-up-the-front fleece and wearing that over (short sleeve) t-shirts and tanks. I kept it and have it stashed away with my wrapping supplies in case I need it again. I also went through my closet and found a wide-sleeved maternity sweater (did they think my arms were going to get huge as well ;)?), and a very slippery inside, slightly too big for me down jacket which slid over the wraps really easily. So maybe look through yours or a close friend's closets and try some things. -- floaton

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Making Time for daily MLD and Exercise

• I'm not coping very well lately - not doing the things I should and feeling crappy about lymphedema. I'm not sure about my massage - not sure I'm doing it correctly and have been told different things by different therapists. One says massage the neck in an upward motion the other says downward!  I just need to read and watch the DVDs and educate myself and just do it. – rrs

• Little things. Don't sit with your hands in your lap. When eating, rest your hands on the table.  (If my memory is correct, this is polite in Spain.) Be a queen--practice your "lymphedema wave." – sushanna

• Have you ever seen a parade where the queens and princesses wave from the floats? That's what I call the lymphedema wave. It sort of is a wave from the elbow. I also sometimes pretend I'm pushing something away from me with my arm (extending it in front of me) I started doing that when I travel in a car, so my arm does just not sit in my lap. It maybe gets the lymph fluid to move and not just stagnate. Don't know for sure but my arm does not swell when I travel. so it must do some thing. – bingbing

• Best thing for me is to move my arm whenever I remember. Cat scratching movements with my fingers, bending and stretching wrists and elbows and shoulders. When I look around and see everyone staring at me like I've lost it, I know I've gone too far. Otherwise, it works great! – Binney4

• One of my doctors advised me to get into the habit of holding on a top button of my shirt or a necklace, in other words to find a "reason" to keep my arm up, instead of hanging down, when I don't use it. It does seem to make sense. It's a way of elevating your arm when you can't use pillows. –Tucheta

• Okay now please don't gasp at this. But I have found when shaving my legs in the shower if I turn the shower head to the relaxing massage I am moving around enough to actually get the back portion of my MLD. It probably should not be used in place of MLD on a regular basis but hey every few days it works well with not too much pressure. – Jennifer

• When I stop at traffic lights or wait my turn at the bank or yes fast food place I also tend to clear the neck and under arm areas and sometimes even the groin area - hey no one can see me and I don't care if they could - lol. If it works for me then that's what counts. Some days I do this several times a day for an extra benefit. – Jennifer

• Don't forget to touch base with your therapist every now and then as well. Especially if insurance covers it you can never go wrong with a couple sessions of formal MLD. Not to mention they are a source of information. – Jennifer

• See Pink Ribbon Newsletter, Responding to Limitations on Family Leisure Participation: Breast Cancer Related Lymphedema, Breast Cancer Team Newsletter, August 2008.

• Stand in front of a mirror when you do your MLD and you will be surprised how much better you do it...when I don't, my mind is on other things. – Jinky

• I'm really grateful for the Lebed DVD, but...uh...I'm finding it only helps if you actually DO it. Took a brief vacation from it and it's hard to get back in the groove, but I sure do feel the difference.

• There are some extra features about it that I value. One is that it's broken up into brief segments, so I can keep it in my computer and do one section at a time to break up computer work - refreshing! Another is that it is designed to stimulate (and not damage!) the lymph system, and I truly do find it helps with my lymphedema control (also my post-surgery flexibility, which even seven years out I have to keep up with or my chest and shoulder tightens.) But mostly, it's funny and funky and fun. My daughter and I do it together and we always end up laughing.

• I met Sherry Lebed this summer at the National Lymphedema Network conference for professionals (which I'm not!) She put on an early-morning exercise session for the therapists and talked about all the aspects of it from a medical perspective and I was amazed -- here I thought we were just having fun, but no, the whole thing is totally engineered for lymphedema help, and especially for post-breast cancer lymphedema help. One point she made that I really appreciated was the good fun of flirty moves and music, because, she said, we need our sensuality bolstered. Couldn't agree more! Between missing boobs and hair, swollen limbs and those dratted Aromatase Inhibitors, we can use all the flirty fun we can get! – Binney

• I'm in a Cancer Fit exercise program and today one of the women there talked about how sitting on one of those huge exercise balls and gently bouncing stimulates the lymphatic system as well as the adrenals. I know I've heard that a rebounder is good for lymphedema, but I have bad knees and can't do that. This was fun and didn't hurt my knees at all. – Alyjens

• I have had my rebounder for around a year now. It is the type that has the safety grab bar to help keep my balance. My rebounder instructions also said to always wear shoes when using it. I have been on it a few times in bare feet but I would be careful if only wearing socks since you might have a little less traction. When I first started rebounding, it was so much fun I got a little over enthusiastic and felt it in my knees the next couple of days. I have learned that the gentle method, always keep your feet touching the surface is the best. Slow, rhythmic health bouncing" will cause your skin to move with the force of gravity in a back and forth motion which would certainly stimulate the lymphatics. Because I have arm lymphedema I make a point while bouncing to raise my left affected arm above my head as I hold on to the grab bar with my right. I will alternate arms when one arm starts to tire. Sometimes I bounce with both arms raised above my head when I am feeling stable. I just sort of go with how I am feeling at the time. If I have been out all day shopping, carrying groceries or heavy bags and my arm starts to feel a little "full" or achy, I will bounce for 3-5 minutes while watching TD. I also like to bounce first thing in the morning when I have time to "jump start" the lymphatics early in the day. It will be interesting if one day a real clinical study is done on the benefits of rebounding. But for now, I think as long as one uses good judgment by not overdoing it, or jumping too vigorously, (especially if you have known joint problems), it is unlikely it will do any harm and in fact I believe more likely it will do actual good. Be aware that a lot of rebounders are sold with accompanying "exercise DVDs" or specific exercise programs. Koop in mind that these programs are not at all geared for the best benefit of lymphedema patients. Most of the exercises are for losing weight, gaining muscle strength and coordination etc. If you attempt to follow those programs you may find them much more difficult to do and problematic for your lymphedema. I watched my DVD program just once and decided I needed to be 20 years younger and without lymphedema to participate at that level! Stick with the short periods of gentle bouncing...not jumping...to get the best benefit. Just go slow at first if you are new to rebounding. See how you feel the next day and gradually work up to at least a few minutes every day. -- LindaLou

• My joints had trouble on a treadmill, but fortunately have been fine on my rebounder. I have been rebounding for over a year and I rebound barefoot. I was told to start off rebounding in a limited way (one minute daily) and then slowly work up. I was also told not to rebound just in socks, as they are too slippery, but that barefoot or in sneakers would be okay, however, I prefer bare feet for rebounding. -- neat

• Rebounding does help! I couldn't all this week due to a really bad cold, and I can feel the difference. Keep bouncing! – inspiewriter

• It's really no big deal to pop a sleeve on.  I may have gone through a five minute period where I felt self-conscious at the gym, but then realized that I didn't care what anyone else thought about what might be going on with me. – SpunkyGirl

• I do a variety of cardio machines and some strength training (going really slowly and gently on increasing weight in the affected arm) at the gym and I do a bit of hiking as well. The sleeve makes a huge difference for me in how my arm feels even with a long walk. BUT, I hate the thing, and the being even hotter than just exercise and hot flashes make me! So no, it doesn't feel normal, but it finally feels doable. – Katherine

• I felt overwhelmed with the idea of having to wear these garments forever, feeling like it somehow marked me as the running wounded (I run and lift hand weights). But I had a very helpful attitude switch at some point. I just got used to wearing the darn things, and eventually putting on the garments became part of my "getting ready to workout" mental routine, like, OK I'm suited up and good to go. It's like the garments make me feel strong and ready.  They are uncomfortable in the heat but heat is what causes a lot of my swelling so I have no give there -- sometimes in the summer I wear the garments just being outside for a while, even if I'm not running. But I've learned that I have to be very careful about running in the heat anyway.  Consider this: the Under Armour athletic clothes company started by making compression garments to enhance athletic performance. I was in one of their stores today taking advantage of a fabulous sale and I asked the guy who worked there why they feel compression garments help athletic performance and he said something fairly inarticulate about how encasing the muscles makes them more focused, or something. I wanted to brag to him about my fancy-schmancy performance-enhancing garments from Jobst, but I didn't.  

• The lymphatic system doesn't have a pump of its own, so exercise while wearing the compression garments can get the lymph moving and really help lymphedema. I find that my finger is less swollen and my arm less achy when I've gone for a good run in my compression garments. Overall, my symptoms have improved a lot since I started wearing them. So don't stop exercising, it can really help. When people see me out running with this stuff on they assume I have some kind of athletic injury thing going on. – Member_of_the_Club

• I was recently diagnosed with breast lymphedema, and my lymphedema PT told me to wear a compression sleeve & gauntlet as a precaution when lifting weights, which is my primary mode of exercise. I thought I'd be self-conscious about the sleeve, but it really doesn't faze me at all. The free weights area of gyms tends to be populated mostly by men, and mostly they are focused on impressing each other. They tend not to pay any attention to me, so I just mind my own business. – Ivorymom

• I raced bikes for years, and going out for a long ride on a nice day with the sleeve REALLY bothers me mentally. Cyclists wear arm warmers in cool weather, but of course not in hot. But I live in NYC and I noticed this summer that a lot of Dominican guys who come up here to race wear white arm warmers in the heat, too. Someone told me they're doing it to protect their skin from the sun. So I decided maybe people would just think I was picking up on that trend. I found out you can buy the very lightweight lymphedema sleeves in different colors. I bought a white one, and for a while paired it with a white arm warmer from Zensah. The Zensah sleeve was a lot hotter than my lymphedema sleeve, which is actually quite comfortable, even in hot weather, so now I'm going to keep my old white sleeves and wear them on my "good" arm so I look balanced. – kriserts

• I usually wear a compression shirt (Under Armour) and a sleeve on my right arm when I exercise (climbing, hiking, weight lifting, elliptical glider). I used to get dependent edema even before breast cancer, and now I don't notice any problems when hiking with poles. Finally, if it is too hot to wear compression garments I either don't exercise, or I swim. – lisa-e

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Dealing with Night Garments and Sleeves/Gloves

• By the way if you are using a night sleeve it never hurts to have a set of current bandages on hand.  I try (but have been a little too lax) to wrap when I need to wash the night sleeve. This way the night sleeve can dry overnight and I can keep current with my wrapping skills. This also tends to soften my arm even more so. – Jennifer

• Some night compression garments (mine are Solaris) can be refrigerated during the day, and the chipped foam filling holds the cool for a long time. – Binney4

• I have a "cheat night' once a week when I don't wear my sleeve. . . it my treat to myself!  - msmarymac

• When wearing breast binders at night, I try to wear them in different pretty colors. - OneBadBoob

• When I was waiting for my new glove (my old one had a couple of holes in it) I used very fine embroidery thread the same color as my glove and it worked perfect. I divided the strands up and only used 2 at a time and I could not feel it and it didn't make one bit of difference in my glove and no one notice it. Yeah!!!!Yeah!!!!! Maybe because I don't have insurance is why I am always trying to find cheaper ways to do things. – Jinky

• My lymphedema therapist gave me a finger glove yesterday to sleep with on my swollen index finger and it was comfortable and seemed to help with the swelling. No compression mentioned, but there is definitely some. Not as much as wrapping, but for me with swollen fingers it seems to be very helpful and comfortable to sleep in as well. Following my lymphedema therapist's suggestion I cut off the tip. I think this would really only be an option for someone whose lymphedema is largely in their fingers. Or maybe these could be used to augment a gauntlet.--Member of the Club

• I had a problem with chafing from my compression garment in the web between my thumb and first finger. I called Juzo and they recommended Prosthetic Fitting Lotion.  When I went to the local medical supply store, he said that was a great suggestion but I needed to heal first. He recommended 3M Microfoam Tape. I bought both. I wore the tape, which helped enormously and I healed in no time. From then on I've been using the Lotion and had no problems. The lotion comes in a 4 oz. size and will last a lifetime! - Kane

• For chafing, maybe try a little bit of Artiflex.  I use it in the killer elbow crease of my compression sleeves. - SleeveNinja

• You can try dusting on a bit of Gold Bond Powder or a little Baby Powder. That works for mild rubbing, but the Artiflex covers tougher sores. - Binney

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  The top 10 Reasons to See Your Lymphedema Therapist Every 6 Months

  by Linda McGrath Boyle, PT, DPT, OCS, CLT-LANA

  1.     To prevent an infection that could result in a hospital stay.

  2.     To prevent the involved area from becoming larger.

  3.     To prevent the involved area from becoming firm.

  4.     To obtain new garments for consistent and effective compression.

  5.     To learn about new and improved lymphedema products that are being invented.

  6.     To review your self-care strategies which may change and reduce the time required for your daily routine.

  7.     Your insurance company may change your garment benefit.

  8.     If your lymphedema worsens, you may need to repeat phase I treatment, which includes daily bandaging, manual lymphatic drainage, skin care, and exercises. If your lymphedema is well-controlled, you may only need one visit for new garment measurements and review of self-care instruction.

  9.     Most people more effectively control their lymphedema if they attend regular checkups with their lymphedema therapist.

  10.   Last but not least, you'll receive support and encouragement from your lymphedema therapist. You deserve credit for a job well done!

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Looking Lovey and Stylish in Your Sleeves --Accessorize with a Scarf!

It's summer.

There's a collective groan among those who have encountered LE.

What to wear?

When we were in Europe, earlier this spring, EVERYONE was wearing scarves. Scarves were available EVERYwhere, in every possible design.

I bought a 6 foot scarf that is made of one continuous piece of 'pre-pleated' fabric which measures about 20 inches in it's natural/scrunchie state. It measures about 40 inches when the fabric is pulled to it's max width or flattened.

Anyhow. Quite by accident, while in Europe I wrapped the scarf around my compression sleeved arm while wearing a tank top. A little tuck here and there and I could have one 'naked' arm and one bare shoulder. VOILA!!!!!

For the first time in the summer I felt like I didn't need to be 'on guard' from total strangers asking what I'd done to my arm. Oh happy day!!

Today, a delightfully warm summer day in the low 80's, we went to see "Jersey Boys" and I decided to use my European scarf idea again & wanted it not to flop/slip around so much --with me tugging. So I made the scarf into a 'tube' by sewing it closed at one edge to slide my compression sleeve'd arm into and then just draped the rest of the length of the scarf around my neck. The sewing it shut/tube is a more permanent solution for using the scarf as a dressy hiding spot. I hope that this makes sense.

Here's the scarf:

Here's what I mean by scrunchie-fabric:

6 foot in length to start.

I sewed the long edges together at one end to create a sort of tube.

I sewed the scarf by hand.

Here's a little closer-look at the hand-sewn edge:

Here's what it looked like at Jersey Boys:

Here's a couple of other views once home:

It 'held-up' completely 7 hours, we're home now:

Here's the way it looked in the back once home:

So I offer this 'idea' as one way for those who only have one arm involved in this journey, to have a way to wear a tank top/sundress and with a bit of slight-of-hand a bare arm and a second bare shoulder. It's give me a whole new perspective.

I think you could find very dressy fabric/scarf and really make something awesome that would look quite contemporary/artistic/asymetric and give you some privacy.

Here's the picture I asked DH to take, when the lightbulb went off that this was an awesome idea and might bring some happy, happy to others, too:
 

 

BTW: I'm leaning against an Italian wall in the village of Lucca.

[This is same tank top & same scarf -- as you can see, pre-sewn-tube concept.]

In this first-ever version I had just tucked one end of the scarf into my wrist compression sleeve and a bit of scarf is stuffed into the shoulder band of my sleeve as well.

At the time, I thought I was totally all glam, with my arm against the pillar for said photo to share with you at a later date.

It wasn't until I downloaded the photos that I realized that the compression sleeve was all exposed and that's when the concept of the tube emerged as an 'up-grade-idea.'

I have been experimenting with scarves for the last month.

Having enough length in the scarf seems to be the real solution -- especially for the body-draping concept. I hope that the illustion gives the impression of just a scarf draped oh so casually across the shoulder (to the on-looker.)

The tube affair is the real camoflage.

As you may be realizing, I am now at the point of wearing just a sleeve for 'everyday' sitting at the theatre events. I still wear gauntlet when doing anything physical, flying etc etc.

I think with enough material in the scarf you could put a little stitch in the very end to create a mitten effect and still hide an entire gauntlet with ease.  faithandfifty

 

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Gloves/Gauntlets/Sleeves and Hygiene

With everybody telling us to wash our hands frequently, I'm looking for solutions to the problem of how to keep my gloves clean throughout the day. I've written to a number of garment makers, but they're pretty much clueless (some are surprised nobody's asked them that before!) Here's what I've discovered so far:

• Wearing plastic gloves over my compression gloves makes my hands sweat instantly and soaks my compression gloves in a matter of minutes -- miserably uncomfortable, and not especially helpful from the standpoint of fungal infections either.

• Alcohol applications like Purell will ruin the fabric of our compression garments.

• Dry cleansers like dry shampoo give your hair a lift by cutting down on the grease, but they don't actually clean anything.

• Dry antiseptics have nasty things in them like boric acid that you wouldn't want on your hands.

• I can take my gloves off and wash my hands a lot when I'm doing anything messy or unhygienic (even though with compression garments that's not very easy), but that doesn't prevent them from collecting germs and crud from doorknobs or other innocent-looking surfaces.

• I can (and do) just wash my gloves throughout the day while they're still on my hands, using hot water and Ivory or Dove hand soap. I dry them on a thick towel just like I would my hands alone, but of course they're still damp. I can't handle books or papers until they dry (here in the desert that only takes 15 or 20 minutes). But if it's cold (think, air conditioning) that doesn't work, because my hands freeze. And if I lived somewhere humid it wouldn't be a good idea to leave my hands damp for long enough for it to dry out.

• And here's a tip from one of the garment makers: For goodness sake wash the things every day! – Binney

• As a pianist who plays with gloves occasionally, you might find these good for over-gloves - you could wear them over your gloves in public: http://www.gallawayb2b.com/Products/Inspection-Gloves  They are a stretchy (not too stretchy) nylon...and come in cotton too. I found that the cotton lose their shape, however, they absorb dirt and oils better and thus are a bit more tactile. The nylon ones are slippery. I have a typical woman's size hand and I ordered woman's which I wear alone. The nylon ones wash great in the laundry (with bleach even). The cotton ones shrink.  you could always get a man's size. I find them pretty easy to work with. I can type and play the piano while wearing them. I wear the nylon ones all the time in the winter. I found that you can turn the gloves inside out and trim off the extra fabric along the finger seams for extra dexterity. – apple

• If you are dealing with a situation where you know your compression gloves will be in water or in a situation where they will get very wet, be sure to wear either surgical gloves, dishwashing or rubber garden gloves over your compression gloves. We don't want our compression gloves to stay wet long enough to develop a breeding ground for fungus. For regular protection from germs and dirt, I prefer the stretch nylon gloves mentioned by Apple at Stretch Nylon Inspectors Gloves ~ Gallawayb2b.com. (Picture Above). They fit nicely over compression gloves. I order them by the dozen. I keep several pair with me in my handbag, so I can put a fresh pair on frequently, then wash them all at night and start my day off with several clean pairs of nylon gloves and surgical gloves in my bag. It has made a real difference in my feeling safer at keeping germs and dirt at bay. You can also easily dye the nylon gloves to match your various outfits--OneBadBoob 

• One thing I do in public restrooms is grab a paper towel before I turn off the water, use the towel to turn off the water so I'm not touching the dirty handle with my clean hand. I also use a towel to open the door when I leave. Of course, then I'm out in the world without a clean paper towel, and I do touch things, but I also have developed some little tricks to avoid getting germs on my hands: I push the elevator button with my elbow, and I use the hem of my shirt or my sleeve (if I'm wearing long sleeves) to open doors or flip switches. – aprilintexas

• When I have to use a keyboard that is used by others, I wipe it down with an anti-septic wipe. Phones too. – Kira 

• On that note, don't use the 'community pen' at businesses when writing checks or noting use of your check card in your register or signing in on the guest register at businesses. – lvtwoqlt 

• Also, cough and sneeze into your elbow or tissue, not your hands. – leaf

• To keep both your glove and sleeve clean at the gym, try wearing a cotton glove and a stockinette over your sleeve. - Binney

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Handling Mammograms

ASCO Patient Guide--Follow Up Care for Breast Cancer, October 2006

Mammographic Findings After Breast Conservation Therapy, MD Anderson Cancer Center, 1999

Mammography will be part of your post treatment surveillance if you had breast conserving surgery and/or have an untreated breast. We reviewed the literature for guidelines about how often mammograms should be done and there was some controversy about the need for every 6 month mammograms, but all of the resources we found recommended that the first mammogram on a breast that has received radiation be performed no sooner than 6 months after the end of radiation. The MD Anderson article is pretty technical, but shows a graph that demonstrates the edema in the breast after surgery and radiation and the skin thickening after radiation, and how those changes can make reading a mammogram difficult and how they tend to resolve over the first year. As the ASCO guidelines state, they are consensus and you should discuss your personal treatment plan with your treating physicians.

 

However, having national guidelines, which are nicely written for patients, gives you a very good tool to help start an informed dialogue. The ASCO site for patients  and their page on guidelines for breast cancer patients are helpful.

 

Calling ASCO has been very helpful as well.

• I am extremely careful regarding no blood pressure, needles, cuts etc. But what about mammograms? I'm a four year survivor, however since my lumpectomy, axillary node removal, chemo and radiation to right side breast, I find mammograms torture. Left side fine..... a little pinchy but ok......right side is another story. Intense pain during, and very sore and swollen breast and arm for several days after. – Pauline3837

• I finally got the breast MRI paid for because I had documented all over my chart that the truncal lymphedema was a problem and compression by the mammogram exacerbated the swelling. – NPat

• I have truncal lymphedema and arm lymphedema. The mammograms DO flare the swelling in my breast. I recommend doing the affected breast last so you can put your bra back one before the breast swells too much – make sure it is snug but not restricting lymph flow. That is why I like the Nancy Ganz camisoles or the other stretchy bras/camisoles. I have also done the breast MRI's but my insurance needs an abnormal mammogram before it will pay for a MRI. - NPat
   
• Take an Aleve or Advil 30 minutes before the mammogram so you are not so uncomfortable. My lymphedema breast is still sore after 3 years and I do shed a tear whenever I get a mammogram on that side. I love it when they say, "Don't breathe." Yeah, right! – NPat

• I noticed today that my lymphedema was a little better after having mammograms this week. Maybe it squeezed open a new pathway. – rrs

• Cool! Mine is also a bit better after mammogram last week, but I know it's really due to the extra elasticized sleeve I'm wearing at night. – inspiewriter

• Wow, I never thought my arm lymphedema would return with a vengeance and turn into truncal and breast swelling FROM A MAMMOGRAM but it did. I got a mammogram a month ago with a terrible nurse doing it. She put way too much pressure on my bad boobie and pulled and twisted the underarm area for a long time. I told her to stop it was causing damage but she just laughed thinking I was a baby. Then, she called me back to do yet ANOTHER one on that breast. I should have told her no. Maybe she was passive aggressive or something. Now I have swelling under my left arm, in the left side of that breast, and on the underarm area itself. It feels like a ball under my arm. I called [my therapist] and returned today to see her for an appointment. She said my arm and hand had no sign of the lymphedema I had before but she was surprised the swelling was in my chest area, and underarm area and back. She has not treated me for 2 years....until now. They did the massage, and used Kinesio Tape on that area. I am wearing the tape now. She feels the swelling will dissipate if I treat the area right, like massages, taping, etc. Yes, I HAVE to get mammograms every year. But NO MORE. I will ask for different diagnostic tests instead. – tornadogirl 

• The same thing happened to me a couple of years ago and I posted here about it, wondering if I was the only one.  I was numb all the way down my arm and side after the test... – zoeymop

• I just got the confirmation phone call from the breast center--my first mammogram after getting truncal lymphedema is next Monday.  That breast hurts most of the time, and hurts even more when it's touched.  I am now terrified that the mammogram procedure will be very painful.  I know I need the test, yet I want desperately to cancel it, or just not show up for it. – NativeMainer

• Talk to the lymphedema therapist, as well as either the radiation oncologist or the surgical oncologist - which ever is more savvy about lymphedema.  Our concern about the pain and discomfort is very real.  And, yes, our fear about what they may find is also very real.  Maybe they have a suggestion about how to proceed.  Maybe there is a pain medication or maybe it's anti-anxiety med or maybe they'd see this as a reason to jump to doing an MRI instead. – bomber410

• I know that MRIs are more expensive and they want to do what costs the least.  However, if the doctor orders the MRI, and there seems to be a very good reason to do so, usually the doctor can demonstrate enough cause that the insurance company won't balk – bygrace1

• I have truncal-boobal lymphedema and was up for a same-side mammogram in September.  It certainly hurt more than the usual mammograms ever did, but wasn't excruciating.  I even survived when they had to come back and press a little harder so they could check a "funny" area.  All clear -- whew! – maxgirl

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Camisoles Instead of Bras May Help Prevent Excess Fluid Build Up

Our group's unscientific study shows that, for some, ditching a banded bra in favor of a camisole may help prevent excess fluid build-up.  

This "unscientific" investigation started several months ago when I went to see my lymphedema therapist and I was wearing a regular banded bra.  This was unusual for me, since I have both breast and bi-lateral arm lymphedema and usually wear compression camisoles during the day.  For whatever reason, I had a banded bra on that day.

As I took it off and laid down on the table for our MLD session, she was shocked at the red marks on both my shoulders from the thin bra straps and under my breasts from the banded bra.  My therapist had a fit, showing me the "red marks" and telling me how they impede lymph flow, period, and to stick with camisoles.

So, I brought this subject up in our support group, and was surprised that  many others also found that "ditching" their bras improved their lymphedema, both arm and chest/breast.  It may not work for everyone, but it certainly is something we recommend you try!--OneBadBoob

• I stopped wearing a bra this summer. Just been wearing cami's. What a difference! No swelling. – reen

• I do think you're on to something: for the last year I was able to get away without a bra, but recently started to work in a situation where I need (or feel the need) to wear one. So, I got a "barely there" bra, but I do notice I'm having to work harder to keep my lymphedema under control. – kira

• I have really liked the Flexees cami... I have several styles that I use for different activities. I have found that most of the shapewear camis regardless of brand want to roll up a little, but once they are tucked into underwear or hose, they are beautiful.  As an added bonus to switching to these types of camis all my clothes look better on... no little bumps or rolls... which is nice (they also don't bother my scar which is still sensitive 3 years out) – t9jorda

• I totally agree--wearing cami's makes a great difference! But, since I also have breast lymphedema, I find that cami's WITHOUT UNDER WIRES do an even better job at not impeding lymph flow. I found the Maidenform Control It with no under wires--fits me to a T! – OneBadBoob

• I've been wearing the lycra camis from Barely There Comfortable Curves Indulgence Shaping Cami  for the last couple years.  When I run, I wear one under layers of poly/lycra shirts in winter and need no extra bra.  In the summer, I add a sports bra over top of the cami. – bomber410

• I have had both breasts removed. No reconstruction. I always wear shelf top tanks from Walmart for $5 and $7.00. Love them and I wear foam breasts from Sears at I think , around $20.00. I never wear a bra and I wear a blouse with them when I go somewhere. – jinky

• I found a compression tank at Target (Asset brand, around $20).  I was sure that my lymphedema was better on the days I wore it. I wear one all day, plus my glove when we walk at night ... no pain or swelling. I wore the Under Armour  products during the winter so was looking for something similar but sleeveless for our hot Houston summer.  I really think we are on to something. We will lick this yet!! – mccarroll

• Here's something of interest that may work... it's a bike unitard. I wore something similar to this prior to breast cancer with a T-shirt/jacket/vest thrown over... the concept takes a bit to get use to, but once I did, I loved it. It would not have any pinch points to restrict the flow of lymph fluid as you move.... may be worth a try. - t9jorda

• I wore a cotton tank instead of the barely there crop bra, and it felt so much better: no red line around my chest when I got home. – kira

• I wore a regular bra once to go to my LE appointment, and my therapist had a fit, showing me the "red marks" and telling me how they impede lymph flow, period. The reason I like the Maidenform Control It better than the Barely There is that the straps are wider.  I sometimes get red marks on my shoulders from the Barely There. I guess we are all different and have to experiment with what works for us. – OneBadBoob

• I'm also more comfortable in camis, never could support a bra after my mastectomy. In the summer though I find them hot under a t-shirt, so what I did is cut them about 3 inches under the breast form and sewed a wide elastic band that is not tight on my chest, just to keep the cami from running up. – Welga

• I wear the Still You Mastectomy Camisole Tank Top, with a bit of an adjustment, especially for the summer.   I cut off the outer long cami part which leaves me with a pocketed cami bra that works great with foam or poly filled forms. – Sher

• Here are a few suggestions for adjustments to camis to make them work for our specific needs:

• The Cancer Society on-line store has "shoulder cushions" that attach to your bra straps to keep the narrow straps from cutting into your shoulder: http://www.tlcdirect.org/products/sku-8083__dept-14.html

• And it has easy sew-in prosthesis pockets that come with instructions for hand-stitching them in (or get a "crafty" friend to do it for you)  http://www.tlcdirect.org/products/sku-7576__dept-16.html

• Or the instructions for designing your own sew-in pockets in any item (bra, cami, swimsuit) are on-line here:http://www.threadsmagazine.com/item/5079/adapt-a-bra-to-accommodate-a-prosthesis-- Binney

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Shaving under arms

• I am using Braun Silk Finish Trimmer and I find it safe. There is no pinching or pulling, it works like a miniature hair clipper and it's almost the size of a classic razor. Of course, I "practiced" first on other parts of the body and the good armpit, to make sure nothing bad happens. -Tucheta

 

 

• A Seiko S-Yard PS334 Shavy Femini Personal Shaver can be found here in the US.  Designed and Engineered by Seiko S-Yard to be used ANYWHERE on Your Body Without Nicking or Cutting. 

 

 

• Conair has a Ladies Multi Use Beauty Kit

Features

• Full size shaver head
• Bikini trimmer head
• Eyebrow trimmer
• 2 Position eyebrow comb
• 5 Position attachment comb

• I sometimes use an electric razor that looks like the one Tucheta uses, but mine is a Panasonic with interchangeable heads. The head I use on it is the smallest one and resembles the cutting end of Tucheta's razor. The tiny cutting area helps because my armpits are not as smoothly shaped as they were pre-surgery. Unfortunately, my Panasonic does not hold a charge well at all and I have to re-charge it very frequently. Sometimes I use a non-electric shaver, being careful to keep it clean and not to use it unless my lymphedema is very well-behaved at the time. To help minimize risk, I also do not shave as frequently as I did pre-surgery. -neat

• I use an electric and have now been:  Washing armpit with Dial first;  Soaking electric razor head in peroxide for a while before the shave.  Using a wet/dry razor ALWAYS WET and ALWAYS with shaving cream. This is key. Every dang time I use soap there is redness. And I do not try to get too close. I follow up with a teeny, tiny 1/4" mustache trimmer for any rogue hairs left behind,and resolve not to do the wave over much or swing on monkey bars. The days of the super smooth pit are over for me...Not evolved enough to let 'em really go rogue a la 1980's madonna---just not that gal! - moogie

 

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Effects on Sexuality and Self Image

Lymphedema is not sexy. No. Not a bit. And for some reason we never talk about that. At the recent National Lymphedema Network conference, researcher Elise Radina presented the results of her survey on "Influences of Post-Breast Cancer Lymphedema on Sexual Relationships." She shared many quotes from her interviews, some depressing and a couple either philosophically accepting of relationship changes or completely at ease with the whole issue.

Her abstract states: "Women with post-breast cancer lymphedema can experience physical, psychological, and sexual problems as a result of both physical limitations and appearance associated with this condition...Two predominant themes were identified...The first theme, Not Feeling Sexy Anymore, related to the specific influence post-breast cancer lymphedema seemed to have on these participants' sense of themselves as sexual beings. The second theme, Changes in Intimate Relationships, involved participants citing changes in both sexual and non-sexual aspects of their intimate relationships with their partners as a result of post-breast cancer lymphedema and/or breast cancer."

No surprises there, but it does bring up the challenge we face with lymphedema, and I thought it might be worth saying out loud. For me, the breast cancer -- even double mastectomies with no recon and six years on aromatase inhibitors -- didn't present the relationship challenge that the lymphedema has. Four years after my lymphedema diagnosis, I can finally say we're happily back on track, but this has been a long and very complicated haul.  

Radina's study did not suggest any practical ways to improve the sexual deficit that lymphedema leaves in its wake. For me, a zipper in my night sleeves has made a positive difference. A wrapped arm is a stunning obstacle to intimacy, but an easy-off (and easy back on) night sleeve makes a difference to both of us. So, of course, does making the time in the early evening to share thoughts, feelings and experiences, as that's always been a feature of our relationship that makes us closer. My sexual self takes a beating when my hand or arm is ugly from swelling, or when I'm in pain from chest swelling, so careful lymphedema control is also a factor in making intimacy possible. – Binney

• See Pink Ribbon Newsletter, Study 2, Breast Cancer Related Lymphedema and Sexual Relationships in Mid and Later Life, Breast Cancer Team Newsletter, August 2008.

• Hubbie has been away for a much needed vacation for a week. Caregiver stress demanded it. And I feel like I am dating my PT!! – lionessdoe

• Heck yes it affects my self esteem, but so did the diagnosis and treatment of cancer in more ways than I can count! I have aged ten years in one and the before and after photos are not pretty! Then marches in the breast lymphedema bandaging, and massages and it feels like I spend more time with the girls than he ever did! And the pain of lymphedema is not to be understated. Nor the partner's fear of hurting us. Wish I would have married a leg man now. - lionessdoe

• To be honest, a much bigger problem with intimacy comes from my taking Tamoxifen, and him not wanting to take any risks that a pregnancy could occur. That's a big hurdle for us. Wrapping and sleeves have just become part of life for us. I see people in wheelchairs or with permanent limps, or other life changing problems and I feel lucky. – inspiewriter

• Oh yes, sometimes it can be very difficult to feel sexy and attractive going to bed with a night sleeve and/or a breast binder on!  What I have found helpful is to have some relaxation time before bed, maybe a glass of wine and shower or bath, and leave off the night garments for a bit.  Have your significant other get involved in MLD, (can be very sexy and relaxing) by candle light and some soft music.   Then, time for some "snuggles" if you know what I mean. . .  Then, before going to sleep, time to get back into your nighttime lymphedema gear. - OneBadBoob

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When People Ask: What is that on your arm/hand?

• I got the question the other day at an outdoor festival and it was hot as can be. I explained that I hadn't done anything to my arm but that I had lymphedema. Then, I got the next question, "What is that?" So, I tried to make it short and said that it was a result of BC surgery and treatment and it was sort of a pain in the butt. Then, I got, "Well, at least you're alive." It just struck me wrong -- I started to say, yes, I'm alive and you are too and you don't have to wear one of these freakin' sleeves! I'm very happy about being alive, thank you! I know my treatment saved my life but sometimes I just get a little irritated with these conversations. Whew -- I feel better. Thanks for listening. Keep cool swell sisters. - rrs

• When I don't want to talk about it or explain it, "I got a very bad boo-boo and don't wish to discuss it." - Spunkygirl

• Thought I'd add my 2 cents here----I work as a Nurse in a hospital and get this question all of the time from patients and family. I tell them the truth--it's a result of breast cancer surgery. I'm not offended nor do I feel the need to become defensive when they ask-- it's human curiosity. I use it as an opportunity to "educate" people-how else are they to know unless they ask?? I would venture to say that most of the population that has experienced lymphedema had little clue as to the whys and reasons that we wear these lovely, hot, ugly sleeves before diagnosis!!!!!! None of us asked for cancer but why waste time and energy getting upset about something so trivial as this "question"? - katiejane

• Hi all - I'm afraid I don't do much for the lymphoedema (Brit spelling!) cause in this respect. I've gone for concealment/camouflage as much as possible with coloured sleeves/long sleeves/three-quarter sleeves and occasionally no sleeves at all. I HATE being questioned by people, whether I know them or not, about my physical appearance. I think it's downright rude. I'm happy to talk about lymphoedema to people, but on my terms, not because I've been cornered and asked about how weird I look. I find even the most 'attractive' sleeves extremely unsightly and I'm more than happy not to see my own for most of the day! - Bahons2

• It does get annoying. But I find myself often asking other people I meet what they did to their own wrapped/bandaged/casted body parts--I feel I am being a caring person. It's also because I assume it's due to an injury--would never dream of asking if I thought I was inquiring about something like breast cancer!

• Once a car salesman about my compression sleeve--and then told me he'd worn one for years after a severe burn. I don't ever tell them b/c, if it's a stranger. If they ask "Do you have carpal tunnel?" I say "something like that." Sometimes my dear husband speaks up and tells them "it's old age" and that shuts them up.  Once a waitress got so insistent and I ended up telling her everything--and was pretty annoyed with her. I think she was sorry she asked. Sometimes I just say "I have edema" and leave it at that. Let them look it up if they like. - inspiewriter

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Self-Consciousness in Public

• I have bought kids tights (multi-colored with flowers etc.) to cover my sleeve during the day. I cut off the legs and there's your covering! certainly cost effective. – msmarymac  [Note: when using this suggestion, make sure the tights are large enough around that they don't add unwanted or uneven compression.]

• Juzo Colored Dream Sleeves are wonderful to coordinate with your outfits. OneBadBoob

• LympheDivas has a line of in-your-face garments for those days when you're up to shedding the camouflage and daring the world to ask you about it.  -Binney4

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Flying, Traveling and Lymphedema--Problems Encountered at the Airport

• The therapist recommended that I purchase an lymphedema sleeve and glove (gauntlet), and wear them when I use my left arm in repetitive-motion activity, like raking the lawn, scrubbing floors, etc.  She also told me to wear the sleeve and glove on commercial airplane flights, to prevent swelling that might occur with the lower cabin pressure.  She made this recommendation despite the fact that all the measurements and tests she did showed no evidence of lymphedema at all....at the present time. It's uncomfortable to wear the sleeve, but I'll bet it's a lot more uncomfortable once you develop lymphedema. – otter

• I can certainly understand why you wouldn't want to wear garments just to prevent lymphedema if you didn't already have it. They're hot. And they're ugly. And while the TSA folks are not allowed to outright harass you, they can wand you if they don't like the look of your get-up.  All true. But I still wish my oncologist had seen to it that I had the lymphedema gear I needed before I flew and developed lymphedema. – Binney4

• If you don't already have lymphedema and decide not to wear the garments, you might want to get them anyway and take them with you in your carry-on. That way, if you do have trouble on the way to NY you'll have what you need to get home safely and not ruin your trip. – Binney4

• I would recommend using the sleeve to avoid an issue with lymphedema. Don't take chances. – OLBinNJ

• To avoid the security issues, I take my bandages in my carry on. Once I go through security, I wrap my arm. There's always plenty of time since you have to get to the airport so far in advance. It usually takes time to get through the airport, pick up our luggage, and get to the hotel, so it's usually at least an hour after landing, and time to take the bandages off. – OLBinNJ
   

• I had a bilateral mastectomy [no lymphedema yet). I flew eight hours to French Polynesia. I was in the air over nine hours. I chose not to wear any lymphedema coverings but did get up and walk around which isn't easy on the sardine aircraft these days but it's a must. I am returning to Polynesia this coming October 2008. It's a personal choice and I may opt to wear something this time – sahalie

• I don't have lymphedema. I had one node removed (negative). I went to a lymphedema specialist and was fitted for a sleeve and gauntlet, and I wear them only on plane rides. I ride overseas for very long hours and I don't want ANY problems. I don't find it to be a problem in the airplane. It's usually cold in the plane anyway. And, I found I got more help with my luggage! Many have no idea what that is – some think you don't have an arm or something! I really don't see it as anything bad and they are not all that ugly. You can get funky ones on-line somewhere Lymphedivas . But...for just a plane ride? No big deal. Worth preventing lymphedema. – LympheDIVAs™ LLC : Medically Correct Fashion  ravdeb

• I travel a fair amount for business. I have both the day sleeve/glove and the night mitt. I like the night mitt best for air travel. I have not been asked by security to remove it. Granted, I have not done any international travel since wearing the sleeves. However, regardless of which I wear, no one has called attention and asked for either to be removed. I also like to wear a compression camisole when traveling. Combined with the night mitt, it seems to provide the best comfort. – bomber410 It's very telling what's happening to your body with air travel when you look at an empty plastic bottle after you land. It is sucked flat. – bomber410

• ! just returned from my first trip (flying) since diagnosis in 2007. It was a 3.5-hour flight and it didn't cause me any problems with my lymphedema. However, I did wear a Tribute compression vest, both arms were in compression sleeves and I wore my gauntlets on my hands. What did bother my lymphedema was the hot, humid climate of Ohio! I live where there is very little humidity and very few days see 90 degrees in the summer. I'm still trying to get my body back to where it was before the trip. I also made sure to do my lymphedema massage two times a day to keep swelling to a minimum. – katiejane
   

• The National Lymphedema Network has recently released updates on three of their position papers. The one concerning Air Travel and the ones on exercise and risk reduction. You can find all three updated position papers at the NLN website at: NLN Position Papers | National Lymphedema Network - LindaLou

• Yes, I developed lymphedema kicked off by two airplane trips, both were over 5 hours. I didn't wear a sleeve because surgeon said I didn't need to worry – he only removed 3 nodes. Had lumpectomy, sentinel node biopsy, and radiation. Flew at end of radiation cycle. Think it was combination of both. Ended up with lymphedema in arm, hand and breast!! If I were you, I would get a referral to a LANA certified (135 hours) Lymphedema therapist and get fitted for a compression sleeve. In my area there is a pharmacy that carries all the over the counter compression garments (legs & arms) and has a professional fitter to fit the sleeve. – bygrace1

• Get a gauntlet also, not just a sleeve, as just the sleeve alone can cause swelling in the hand--which could develop into lymphedema in your hand and you don't want that! – bygrace1

• I ordered a cute, pink, zippered yoga mat bag to carry my sleeve in when I travel. Just received it today. It's better than carrying that sleeve around and having people think I've pulled the arm off a sports mascot or something. – rrs

• I got a sleeve for flying, after consulting a lymphedema therapist. I paid for it--about $50 I think, and consider it cheap insurance. It was not uncomfortable and it felt good to do something preventative, as with breast cancer there aren't many preventative strategies we can use. I also was told to stay well hydrated and move around as much as possible. – hattie

• I will say, flying is when I can really feel those sleeves are doing something. You can tell that your tissue is expanding and the sleeve and glove is helping. Surgeons are always pooh-poohing this risk. They aren't the ones that have to follow women with the problem. – jlazyk

• My surgeon told me a sleeve was unnecessary. I think that's a pretty typical attitude on the part of surgeons. But he did write me a prescription (all but rolling his eyes as he did so), and I do plan to get one, based on what I've learned. – lewing

• Just wanted to let you know that I had NO problems with security and sleeves. No one even made a comment or took a second look. I didn't put my compression vest on until after I passed through security. I think that may have caused them to take a second look. Just wanted to share my experience. – katiejane

• Once, a male TSA agent asked me to remove the sleeve. Two of the lady agents said I didn't have to, but I did get the sniffer thing. – StefS

• I don't know about the security regulations in other countries, but the TSA web site makes it clear that they may NOT require you to remove any medically-related anything. We're so good at standing up for ourselves with the lymphedema, guess we may have to use that skill at the airport too! – Binney4

• Juzo, by the way, has a patient-friendly (and I assume TSA-friendly) booklet about lymphedema that you can order free. They're nice to have when you're traveling, for interested TSA'ers or fellow travelers. I got a stack by calling 1-800-255-1300. – Binney4

• I always bandage both arms and wear a heavy black, padded lymphedema vest for my truncal lymphedema, so they're naturally going to pull me out of the line and do their thing with wands and such. I'd be alarmed if they didn't, since I could be smuggling just about anything in all that padding! – Binney4 

• When traveling, keep all LE garments and supplies (including your antibiotic ointment, antiseptic wipes and band aids) with you in your carry-on. If your checked luggage doesn't arrive when you do, you'll still have everything you need to take care of yourself. – Binney4  IF you don't already have one on hand, ask your doctor about a prescription for an oral antibiotic to take with you when traveling, so you can respond quickly to infection. – Binney4

• Whenever possible, put on the gear (glove and sleeve) before packing. (Stuffing a suitcase on the floor is not good for lymphedema.) Whenever possible elevate the suitcase before packing. ("Elevate" as in place on a higher surface, not "elevate" as in "levitate.") – sushanna1

• I just flew last week and it depended on the airport security. I left from Alabama and no questions were asked of my sleeve. I got to Maine all safe and sound. On the return flight from Portland, security pulled me to the side. It was a female and she asked me what it was. I explained. She asked if I could pull it off. I said yes and went to do it and she said, no don't touch it! She then told me to step to the side. She called another lady over to wand me and a man walked by. He said, what's up with her? She said going to wand her because of her arm. He said oh my wife wears that when flying and its for a surgery so she is ok. I have to admit it was funny that a guy knew what was going on and the women were clueless. He was a supervisor and told me to move along and sorry for the inconvenience and that he hoped my treatments were going well. – lv2cmp

• I always have the wipe off pad gun powder thingy. I have taken to going early, not wearing any wraps on arm through the security gate, carrying them in my bag/purse and wrapping donning at gate. – gracejon

• I wear a pad inside the glove and the security person didn't like the way it looked and asked if I could remove it. I told her it would take about 10 minutes because I had to do special exercises before and after. I explained why I was wearing it (and the sleeve.) At that point, a supervisor who was literally seated above us, said out loud. "It's a medical device, you don't have to remove it." I replied, "I don't mind." He replied, "It's a medical device. Don't remove it." At that point, the security person produced a small piece of fabric. I was afraid that it was treated with some chemical that would damage the fabric of the glove and sleeve and kept saying, "Don't touch them. They cost me a lot of money. Just let me remove them." The supervisor on high reassured me that it was just cloth and that there were no chemicals so I shut up. After being lightly touched with the "gun powder thingy" (Thanks gracejon.) I watched the security person put it under a piece of equipment and I was allowed to move on. I apologized to the security person and thanked the supervisor (on high) for explaining things. – sushanna1

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Summertime Heat Discomfort in Compression Garments and Bug Protection

• Nobody notices the sleeve in the winter under my clothes and in the summer I got used to it and stopped minding people's questions. It's OK now. – BernadetteD

• I'm doing fine, in spite of the summer heat - but maybe that's because I'm staying inside! Compression garments are NOT good protection from sunburn, and there's nothing wickeder than a nasty burn on your LE arm. They also don't protect from insect bites, so use other protection.

• Those neckbands you soak and they stay cool for a long time can help keep you comfortable in hot weather.

• Plan your summer days so outside activities are done in the early morning or in the evening.

• Some night compression garments (mine are Solaris) can be refrigerated during the day, and the chipped foam filling holds the cool for a long time.

• When you remove your compression garments to swim, be sure to put them on again as soon as you're dry.

• Keep your skin well moisturized. And keep yourself well hydrated.

• If you live in a dry, hot climate you can wet down your sleeves sometimes to keep you cool, but be sure to let them dry thoroughly before wetting again -- you don't want to encourage a fungus infection.

• In hot weather you need salt, so it's a bit more of a juggling act to keep from overdoing it and making swelling worse. – Binney4

• Some of my husband's motorcycle racer buddies wear cooling vests under their leathers. I think I might order one of these for the hot weather and hot flashes.-- CherylG711

   

• One option for sun protection over our compression garments is companies like Solumbra that offer head-to-toe SPF 30+ protection in clothing ranging from shirts and hats to shawls, gloves, fingerless gloves, and hand protectors. (These are not compression garments, so purchase them in a size large enough to be worn comfortably over your lymphedema garments.) – Binney

• Solumbra: http://www.sunprecautions.com/

• I bought a mosquito suit online for about $35 which covers me from head to toe. It's hot and ugly but it works and you don't have to use poisons on your body to keep them at bay. Since the hood that comes with the suit is meant to go over a baseball hot, I also bought one that covers a full brim hat. Works great and is more comfortable since it keeps the netting further away from my face. I've read that the netting shouldn't touch your skin or they will bite through it, so I ordered a larger size. – Kane

  • mosquito net body suit:  http://www.rei.com/product/800965

  • mosquito head net for wide-brimmed hat:  http://www.rei.com/product/799982

  • insect shield bug mitts:  http://www.rei.com/product/800968

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Special Needs Protective Garments--dog groomers, gardeners, etc.

There are Kevlar gloves and sleeves that are puncture proof – you can google them.  If you're getting nicked while gardening, or if you have a job like dog grooming or glass cutting perhaps they can help. – Kira

• Kevlar gloves:Kevlar Gloves

• Kevlar sleeves: Kevlar Sleeves

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Swimming and lymphedema

Swimming – if your lymphedema seems worse after swimming, it may be the fit of your swimsuit.

  

Common knowledge has it that swimming is the best exercise available for people with lymphedema. The theory seems to be that the gentle movements of swimming and water-play help stimulate lymph flow, and the pressure of the water helps to control swelling even without wearing compression garments. A real win-win combination!

 

But what if it doesn't work? Some people find that swimming has the opposite effect: it actually causes lymphedema to flare in their arms or chest. There are several reasons this may happen, but one that's usually not recognized is the fit of the swimming suit.

 

Swimsuits can bind at the shoulder, the underarm, or across the chest. All the reaching and stretching involved in water exercise puts extra strain on these areas and may result in restricting lymph flow and causing new fluid buildup. If you suspect this may be a happening to you, choose a suit that provides plenty of flexibility. A tankini like these from Venus, for instance, gives freedom of movement and a fit that's loose enough to prevent congestion.

 

Other points to consider when trouble-shooting lymphedema problems from swimming include:

1. If you're swimming laps, build up gradually, stopping if your arms feel tired or strained. 
2. Vary lap swimming with water exercises (such as "running" in chest-deep water) that allow your arms to relax. 
3. Avoid saunas and hot tubs with water greater than body temperature. 
4. Once you're out of the water, dry and lotion your skin and don your compression garments promptly. 
5. Use sun protection if you're swimming outdoors, stay well hydrated, and avoid infection by assuring that the water you're swimming in is clean.

• I just wanted to report that I have seen more improvement in my arms since I started swimming than any amount of time I had at the lymphedema clinic which did nothing for me. I joined the Y and started out really slow. I had pain issues because of my recon and I originally started swimming to help with the capsular contracture I get from the implants. Then I noticed my arms started to go down. I have also built up my stamina- that was a surprise. I break up the laps with using a board and I put it out in front of me to get a good stretch and I just kick to the other side. It is a great stretch for under the arms and along the sides of the ribcage. Normally, by this time in the summer, because of the heat and humidity and my gardening, my arms would be huge- not this year. In fact, someone actually complimented my arms the other day! THAT almost made me cry. – nosurrender

• Yep. The swimming pool has been a lifesaver for me when it comes to my lymphedema. I have lymphedema in my reconstructed breast, abdomen, back, right arm and hand. I take 1.5 hours a day to do water aerobics in a warm water pool 5 days a week.. I live for the days I get to swim! – bygrace1

• I understand that swimming is supposed to be helpful for lymphedema, but I swear it's been making the lymphedema around my breast, back, and left side worse. -- maxgirl
   
• I love to swim, but I had been doing other aerobic exercise instead, as it less time-consuming (I have a toddler, and getting away long enough to exercise can be a challenge.). Then I got a stress fracture in my foot, and needed to do only no-impact exercise. So I started swimming laps. I definitely noticed an increase in swelling with the lap swimming, and the PT, who had ok'd me going swimming, was horrified to discover I had been doing 1/2 hour of lap swimming per session - mostly crawl stroke. She banned me from any more lap swimming, saying I could do "running" in the pool with my arms relaxed in front or at the side (under water), or swim on my back with my arms at my sides (no backstroke). I am still dealing with the lymphedema flare that started at that time. Anyway, the point of the whole story - if it feels like swimming is aggravating your lymphedema, it IS. You might try modified (minimal use of arms) water exercise, or running in the pool, as alternatives. Yes, the pressure of the water is good for lymphedema - but not if the activity itself aggravates it. -- Eldub

   

• Some water exercises, rather than laps, may help. Then when it's in better control build up to the laps gradually, trying one stroke at a time to see if one or another is the culprit here. A slow side-stroke works well for me, alternating sides, but we're all different. I think butterfly would be a mistake, though. Gentle, slow, and no strain are the issues I have to keep in mind. -- Binney

   

• My regular lap swim suit is fairly tight, and was definitely cutting in and interfering with lymph drainage - especially on the side of my breast and near the shoulder. So I switched to an older, larger suit that also is of a softer fabric and somewhat looser design up top. (It's not a design I'd use for lap swimming - too much potential for gaposis - but fine for upright water activities, like water aerobics and "running" in the pool.) Anyway, that suit is working much better. I also just ordered a new "lap-type" suit a half size larger than I'd normally wear (regular length torso instead of petite), and will see if that one is loose enough to not cut off the lymph flow. -- Eldub

• A postscript -- I went to the pool this morning and mostly did water exercises, but I did a few laps to see if my bathing suit was binding me in any way. Sure enough, when I reached my left arm forward in the crawl, the suit put pressure on my underarm and down the side of my breast. It's not even something I would have noticed before, but I can imagine how a half hour of that might cause LE. -- maxgirl

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Bike Riding and Lymphedema

If you enjoy bike riding but have lymphedema, or at risk for lymphedema, here are some tips for getting back on that bike and riding with the least possible worry.

Wear sunscreen!

Wear your sleeve during and after your ride!!! Nordy

Wear hand protection – glove or gauntlet – along with your compression sleeve – Kira

Make sure you carry enough water to stay well hydrated – Binney4

Use good posture on the bike - shoulders back and down and use your "core" (trunk muscles) to hold the majority of your upper body weight so that your arms aren't taking the brunt.

If you aren't riding hard enough to increase your respiratory rate, then you need to make sure you do some deep breathing during your ride

Change hand positions if you have drop handlebars.

If you have flat handlebars (and even with drop ones) take your hand off frequently, stretch the arm back and overhead, make a fist and then open your fingers several times to help move fluid.  Nordy

Start off slowly – 15 minutes MAX. (That's about three miles, which is really just a warm-up.) Build SLOWLY from there. – Teal3Pink1

I am sorry... but expect to have at least some exacerbation from riding... If you don't have any - then you will be so happy! But be prepared to have some. I know to plan on doing some extra MLD, wrap at night (not too tight!!!) and maybe even use my Flexitouch for a day or two to bring it back to baseline. BUT, I am willing to do these things in order to continue to do something that I really, really love. – Nordy

 

I am anxious to start riding again. My therapist suggested aero bars.   – nurseronda10

 

I have LE and had my bike refitted with very upright handle bars.  Which means I am not leaning on my arm(s) at all.  I'm sitting quite squarely on my ample butt and my arms simply guide the steering. – Sharon51

I have lymphedema and I ride my bike between 3 and 5 times a week. Last year I rode from Seattle to Portland in one day (202 miles) and I have a hundred miler coming up this weekend. The good news is that you CAN ride with lymphedema, but you will have to take some extra precautions both during the ride and after.

I do wear a glove (and sleeve) when I ride, plus the biking glove. Finding a biking glove that fit well over the LE glove and provided good cushioning for my hand was key for me. I have a mountain bike but I do mostly road biking to train for sprint triathlons. I move my hands around to different positions a lot and stretch and pump my arm periodically. I do go up significant inclines (our town is build on a slope) but I don't notice that it adds much stress on my arms; I focus on using my legs and not pulling and I stay seated. And if I don't leave the sleeve on for a while after I'm done I do get more swelling. – Katherine

Test drive different bikes. See what works best for you. Go to a reputable bike shop and see what size frame fits you on each particular brand - or mainly the brand that you like the most. And yes, you can most definitely alter your bike to some extent (obviously you can't change the size of the frame!). The easiest way of moving into a more upright position is by having the stem changed out. They come in different lengths and angles - so having someone who is good with fitting a bike can really help you find a position that is good for you. And this is a fairly inexpensive fix. - Nordy

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Rings, Bracelets and Watches

• How to fix your wedding ring so it comes off if your finger swells with arthritis shanks:  http://mikki630-ivil.tripod.com/id2.html

• If I am exercising, I take off rings on both hands because my hands do swell with exertion. – yellowrose

• I haven't worn my wedding rings since the lymphedema appeared, but would like to get them sized and wear on my right hand. When I go out in the evenings I wear a pretty ring on my left hand, a larger sized one that won't impress my skin.  Never wear watches or bracelets on that arm anymore. – Inspiewriter

• I have small wrists but have gone to a bangle bracelet watchband and can get two fingers under the band so I know it is not tight on the left arm. – lvtwoqlt

• I had bilateral with 3-4 nodes removed from both sides. My wedding band and engagement ring set were snug before surgery. I took them off before surgery and was wearing them daily and removing them every evening but could see an indention where they fit when I took them off, so now, I only wear them when dressing up. – lvtwoqlt 

• Time for a pocket watch, or maybe a lavaliere/pendant watch? – otter 

• I found that I could not wear a watch with a band that does not expand and have taken to wear bracelet types that are not completely enclosed so expansion can occur if swelling increases. – gracejon 

• Since my thumb is usually first to be noticeable, when this swells I know to start monitoring things more closely.  I also can move rings and things to my right unaffected hand if need be and certainly at times do. – gracejon

• I always take my rings off at bedtime. – gracejon

• I wear my wedding ring on a chain around my neck. My right arm is good so I wear a watch on that arm.  I gave all of my rings to my daughters. – jinky

• I stopped wearing my wedding rings years ago because as a RN with all the frequent hand washing and glove wearing they became a liability. – LindaLou

• I don't wear any jewelry on my left lymphedema hand but I do on occasion wear a bracelet or wrist watch on my right at risk arm.  I just make sure that they are so loose I can easily "twirl" them completely around my wrist.  Not so much a problem with a bracelet but it means I have to always move the watch on my wrist until I can see the face of it. – LindaLou

• I do know a lady who wanted some kind of "bling" for her gloved lymphedema left hand, so she attached a large sparkly rhinestone to the outside of her compression glove right where a wedding band would be.  It was definitely a conversation piece! – LindaLou

• Before I gave up and had my rings resized, I used to spray the ring and finger with Windex and it made it easier to slide off. My lymphedema is on my right side, but I get swelling in both hands from time to time (plus I've gained weight). The jeweler that made my rings is the one that suggested Windex, as if you use anything oily it can loosen the stones.  I'm glad I finally got around to getting my rings resized to make one small thing in life a bit easier - LizFL

  (Warning:  Rinse the Windex off promptly with lots of water, and don't use Windex if you've already broken the skin on your fingers trying to get the ring off!)

 

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Measuring blood pressure on your leg:

• There's a company called QuickMedical here: www.quickmedical.com that has a patient help line here: 1-888-345-4858. When I called them they were really helpful and came up with this option: http://www.quickmedical.com/LifeSource/blood-pressure-monitors/ua-789ac-fully-automatic.html

It's a home, automated digital that can also detect irregular heart beats and has a cuff that fits up to 23.6 inches for the thigh. To do the thigh BP you must be lying flat so your heart is at the same level as your thigh and hold the monitor in your hand while inflating. It's made by LifeSource with an AccuFit cuff, costs $129.95 with free shipping. (We are expensive women!) – Binney4

• Here's what I've learned about doing blood pressure on my leg. First, it's important to be lying flat for at least five minutes before the blood pressure is measured. Close your eyes and do some abdominal breathing and think CALM. When the clinician finally comes to do it, try not to talk or move – just lie quiet, with your body as limp and relaxed as you can make it.

The blood pressure cuff is wrapped around the ankle, and the pressure is read over the posterior tibial artery – that'd be the inside of the ankle, near the anklebone. Alternatively, it can be read over the dorsalis pedis artery on the top of the foot. Go ahead and memorize those intriguing names, because the chances are good you're going to be instructing your healthcare providers in how to do this!

At my oncologists office they don't want to take the time to let me lie flat for a few minutes. They insist on doing my blood pressure when I'm sitting up in a chair with one ankle propped on the other knee. So I don't let them take it at all – no point entering inaccurate and nonsensical blood pressure readings in my medical records.

 

The fire station near my house has a supply of cute young paramedics who know how to take ankle blood pressure and will do so gratis whenever they're not busy. (Heh-heh!) So ask if yours will provide that service and stop by at intervals to get blood pressure readings. Keep records to take with you to your doctor -- it will provide them with a leg-blood pressure baseline so you'll all be able to judge if it's rising. – Binney 

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Nail and Cuticle Biting and Care:

• I had my second occurrence of cellulitis within a six month period. Although I lost 27 nodes, the docs were at a loss to understand why it happened: no scratches, bites, skin openings of any kind. But here it is: I have a HORRIBLE habit of picking at my cuticles because they are always terribly dry. I bite them, too. This is how I got cellulitis. – comingtoterms

• Some of my five bouts with cellulitis were from my nails. Now I just use a good hand cream and gently push the cuticles back with the ball of my thumb, not with my nail or any other instrument. I also only use clear polish (I only do French manicures and do them myself) I only put the polish ALMOST to the cuticle and with it being clear you can't tell the difference. – JO-5

• I know I cannot be the only person with this nasty habit. I've probably been biting my nails, down to nothing and bleeding, since I was 2. I've tried many different things to break the habit and it may work for a month, and then there I go again, gnawing away. It wasn't really a SERIOUS problem until now. The therapist says I have latent to stage 1 lymphedema. I don't want this to get worse. – Jendon2004

• After 2 bouts of cellulitis in the past 18 months, I've decided to be more careful with my nails and hands in general. I'm keeping my nails manicured and gloves on constantly when I'm cleaning house and washing dishes. Cellulitis is nothing to laugh about - it's serious and it's something to consider. Your nail-biting habit could land you with a case of it, and believe me, you don't want it. – Suzybelle

• Making a new habit is a difficult thing. Some experts say that it takes at least 45 days to make a new habit. Substituting a new habit for the old is frequently the "easiest" (of the not easy) approaches. To decide what substitution you will make, you need to observe yourself a bit. When do you bite your nails? In your sleep? While waiting in line? When you're nervous? While watching TV? When you're on the phone? On-line? You need to make up your own list. If you're not sure, try to write down the time/circumstances each time for the next day or so. When you know when you bite them (and perhaps some of your triggers), you'll be able to come up with one or more strategies to pursue. 

• I've seen strategies employed that involve one or more of the following tools: (1) bad tasting stuff, (2) manicures (3) knitting or other needlework, (4) gloves/mittens, (5) worry stones, (6) prayer beads, (7) Ohm finger position, (8) a bracelet that can be "fingered," (9) a toothpick to chew on, (10) exercise, (11) tapping on your wrist, and (12) affirmations.

• What tools you'll include in your strategy will depend on your list of triggers/times and what you think will work for you. Identify a tool (not necessarily the ones in my list) that you can substitute in that circumstance. As you go along, you may discover new times/triggers. Don't let it throw you. Just add the new time/circumstance to your list and decide on a substitute.

• At the end of the day, take a look at your list, and think about what happened that day. Certainly you'll want to celebrate successful substitutions (I call that giving yourself a mental "atta-girl."), but when you discover that a substitution didn't work, decide for yourself whether you need a different substitution, or whether there was something that prevented you from employing your substitution:

  • you didn't have what you needed with you.
  • you didn't notice until it was "too late."
  • you didn't want to employ that substitute in that circumstance.

• You'll notice that some of the tools in my list are things to make you notice that you're nail biting (bad tasting stuff/gloves), some are to prevent you from nail biting (like mittens/some gloves), and others are to use as or with a substitute habit.  

• Make a calm plan for what to do differently the next time, edit or add to your list, and start new the next day. This is not an easy thing, but if you keep at it, you will get there.

• Remember, this isn't something that you'll have accomplished in a week or two. At least 45 days to make a new habit. And each of your substitutions is a new habit. – LisaAlissa

• During the winter months my cuticles get dry and the tip of my thumb has always tended to crack. I used to pick and try to get rid of the dead skin, but occasionally (okay, more than occasionally) it would cause my cuticles to bleed. Ever since my lymphedema diagnosis, I realize it is important to stop this behavior. I am so afraid of cellulitis, and I think this helps provide a negative association with cuticle picking. Instead, my attitude now is to maintain my hands and nails in a proactive way, and I apply lotion after every hand washing. I apply lotion before bed, or anytime I notice my hands feel dry. Makes me feel a lot better than I do when I pick! – Tina337

• I was a serious nail biter as a child and saw no reason to stop. Working around germs has helped me stop. One of the things I've done over the years and still do is take my thumb nail and run it under my other nails (just to the quick). It provides stimulation similar to biting. – coraleliz

• I attacked my cuticles and the skin around my nails all my life until my breast cancer diagnosis. They get dry, split, lift up a little, then it only seems natural to try to peel the rough thing off. My fingers have also always split a lot in winter. I quit cold turkey very soon after I was diagnosed, before I started chemo. I work in healthcare and knew what would be coming with the neutropenic precautions, didn't want any hangnails being the reason for ending up in the hospital. Then I got lymphedema and my motivation changed to not wanting cellulitis. For me, it was simply the motivation of fear making me very suddenly stop doing something I'd done all my life. I now have nail clippers in every car, at work, in my jackets, so that if one of my cuticles suddenly ends up splitting and sticking straight up, I (VERY carefully) clip off the protrusion so it doesn't snag. I also pay more attention to keeping my hands moist now. I buy a ton more bandaids to treat splits I otherwise would have just lived with for a while. – Outfield

• Yes, I put bandaids and neosporin on my split thumb immediately. I carry them everywhere. Fear is a great motivator! And honestly, my smooth and moist hands look so much nicer than dry skin and raw cuticles. – Tina337

• One thing that seems to be helping me with the dry cuticle/hangnails is that I put a heavy layer of Bagbalm on my hands, extra on the cuticles, and then wear cotton gloves to bed most nights. Some times I'll take them off half-way thru the night. I get the cotton gloves at CVS in the bandages dept and the Bagbalm is with the Vaseline. I also switched soaps so I wouldn't itch so much. – coraleliz

• I'm glad I'm not the only cuticle picker here – giving that up has been the hardest for me. Besides using muesturizer constantly, I've had the best success with keeping nail clippers everywhere, and carefully nipping off a cuticle if it splits and sticks up. It doesn't help that ever since chemo my nails have been brittle and peel and split, sometimes right down to the quick. – NatsFan

• For me Bag Balm is the only thing that works for me.....put some in thin gloves at night and those oh so sore cracked splits near the nail get fixed up. Also can put it on during the day but the smell isn't good but I don't care as it works. This is what the farmers use on the cows teats. It works........le hugs jinky .....antiseptic to and cost $15 in Canada  jinky

• I thought there would be others who may want to share their "tricks" as to how to prevent dryness/cracked skin in fingers which are regularly being wrapped.  I have dry skin to begin with, so this has been an increasing problem.  I've had good success this week (finally) by using an emollient lip moisturizer by Alba instead of the lotion I was trying.  Just before wrapping the fingers, I've been putting this on the cuticles. They've been looking better every morning and today, for the first time in forever, I have no hangnails.  Yay!  What else has worked for y'all? (I can say that while I'm still living in TX.) kcshrev

Manicures

Regular Manicures

• We can continue to get regular manicures.  We simply must take certain precautions.  It is always better to take your own manicure "tools" with you, and most salons give you a little "box" to keep them in at the shop.
• Do not allow your cuticles to be cut, but have them gently pushed back.
• Keep your hands well moisturized between manicures, and gently push your softened cuticles back gently with an orange stick.
• When coming home from your manicure be sure to give your fingers an "alcohol dip" to make sure they are germ free, and I also cream my hands with Lotromin (anti-fungal cream) in case I could have picked up any fungus.
• Also, we find the longer you keep your nails, the more little "shovels" you have for bacteria, germs, etc.  So, we always keep a nail brush near the anti-bacterial soap and wash and brush under the nails frequently throughout the day.

Gel Nails/Acrylic nails

• We can even continue to use acrylic or gel nails at our manicures.  But we must take certain precautions to protect ourselves from infection.
• I personally used to get acrylic nails, but stopped that during chemo,  I then found after chemo that taking all the supplements I do and the Arimidex (one good thing about it) made my nails "hard as nails," as they say.
• So now, I have a thin layer of UV gel put over my own nails after the "white" being painted on.  There are much less chemicals involved in the gel then the acrylic or powder, and you need to put your nails under a special UV light to get them to "cure" (harden.)
• I bring my own tools and files and pedicure equipment, and my salon gives everyone a little "box" to keep their stuff in.  They also autoclave all of their equipment so if you don't have your own, they break out the equipment from a little plastic bag where it has been sealed after being autoclaved, same as at the dentist.
• I usually wait three weeks before having the "fill-ins" which leaves enough space near the cuticle so they can stay far away from it with the dremmel.  I also have my own dremmel heads in my box, the fat round one and the skinny fine one. 
• I have been using the same lady, and have explained to her my problem that I do not want my cuticles cut, and that she must be very careful with the dremmel or she will never see me again.
• Afterwards, she sprays my hands thoroughly with Sea Breeze, and when I get home, I give them an "alcohol dip" to make sure they are germ free, and I also cream my hands with Lotromin (anti-fungal cream)  and my feet with it also after pedicures, in case I could have picked up any fungus.
• So far I have not had any problems, knock on wood.  But I think taking the extra precautions if you want to continue to have your nails done is well worth it.
• The UV gel is a little more expensive, but it is much "smoother" after being under the UV light, so many times she can do without the dremmel altogether and just use a nail file or one of those square buffing things to smooth them before finishing.
• Also, we find the longer you keep your nails, the more little "shovels" you have for bacteria, germs, etc.  So, we always keep a nail brush near the anti-bacterial soap and wash and brush under the nails frequently throughout the day. - OneBadBoob

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The specific content in this page has been provided by lymphedema patients, and edited and citations provided by our Editorial Board.  See our "About us"  and "Resources" page.

 

Page Last Modified 09/29/2015