Posted on: Oct 14, 2010 07:56PM
EVERYONE can tell I have it... my arm just looks so fat..... I have been to.... and going back to.... therapy..... with a LE specialist... I wrap... I wear compression garments when flying.. exercising... BLAH BLAH BLAH......
I do it all, and I do it right. As a Stylist..... I was told... My job was a good profession to be in as it will help my lymphatic flow.... well....... MY FREAKIN' body... MY personal LE gets MUCH WORSE when I work........
I have to vent this....this is just such an angry spot... such a bad thing.....
If I change the way I dress..... if I do not work in my field...... if if if......................... my LE is ok.
I pray for a cure for this... I PRAY we all can get NODE replacement SOON... PLEASE allow science to figure out a way to REPLACE our nodes.. SOON.
I would rather have chemo all over again... than deal with LE.
Just a post.... to vent.... for ALL OF US. I do not need a pat on the back here sisters.. I need you ALL to get mad with me....... Post YOUR pain in this trip we call LE.......
Posts 9061 - 9090 (9,240 total)
Feb 14, 2017 06:36PM Faith-840 wrote:
LE is a new problem for me, 25 years after I first had BC, it has returned with Mets to my lung. Now I have LE and I'm having trouble with the compression sleeve being so uncomfortable after only a few hours. The first one was very tight so I have the next size up. I still have problems wearing it for more than a few hours. Besides being tight the top of the sleeve has small rubber nubs to keep it from slipping. These make my arm itch like crazy. I'm using a Juzo sleeve. Has anyone found a more. comfortable sleeve that doesn't cause itching? We have to fly to Idaho in May and I can't imagine keeping it on for so long. The therapist said you should put it on before the flight and not take it off for 4-5 hours after. Is that what everyone else has been told? Have you flown without wearing the sleeve and what happens if you do?
Breast cancer the gift that gift that keeps on giving. GR rrrrrrrr I hate LE
Faith (in the future)
Feb 14, 2017 06:46PM MinusTwo wrote:
Faith - Sorry that LE has caught up with you. I put my sleeves on before I leave the house for the airport. I put my gauntlets on once I'm seated in the plane. I take my gauntlets off once we've landed (probably a bad move I know) and I leave the sleeves on for at least an hour after we've landed. (it depends on the land transportation to the final destination.)
I did have a problem on my last flight with my custom gauntlets cutting off the blood flow in my thumbs. I removed my thumb from the gauntlet and went back to using a previous stock product.
That said, my LE is truncal & breast so I am using sleeves as a preventative measure so it doesn't travel any further. I don't have any problems with the silicone dots irritating my arm.
Feb 14, 2017 09:02PM - edited Feb 14, 2017 09:17PM by hugz4u
Faith. Dots make me itch like crazy. Don't scratch whatever you do. The first time I scratched it set me up for future scratching and now I'm sensitive to itching in that area whenever I wear dots and the like. Order custom garment for a better fit with no dots and glue the sleeve on daily like I do. I still have to be careful when wearing off shelf garments occasionally to not scratch. Allergic reaction for sure. Custom will fit you so much better, sounds like you have a poor fit as you should be able to wear for a few hours at a time then build up to all day.
Gauntlet or glove is a must to prevent fluid buildup in the hand when flying. Sleeve alone could push swell into fingers especially if your already well swollen.So it's recommended.
Your therapist is right about doning before and after flight. Well you might be able to get away taking both off after 2-3 hours. See how your arm feels.
Sorry about dang evil cancer returning. Phooey!
Feb 15, 2017 04:36AM doxie wrote:
I'm allergic to the band at the top of the sleeves. After taking the sleeve off, I had itchy red dots and bands on my arm for days. I was then given a sleeve with none at the top. Luckily my LE, mostly truncal, has quieted down recently as I've apparently finally healed from rads and I'm not regularly wearing a sleeve.
Feb 15, 2017 02:50PM Faith-840 wrote:
Thanks everyone for your replies. Since my skin is so sensitive, I thought that this was just my problem and I'm kinda glad to hear I'm not alone but I'm sorry for all of you also. I've been trying to wear the sleeve more to get used to it. Today, I managed 6 hours so coming close to wearing it cross country, but we have a dream to go to Italy if things stay stable and I can't imagine wearing 15 or more hours at this point in time.
It sounds like I need a custom sleeve and a gauntlet. I never thought I would need the gauntlet also. Insurance doesn't pay for any of that. Yikes!
Does anyone know what happens if you don't wear any compression garments when flying. I've had mild swelling in my legs when flying or driving long ways and wore OTC compression stockings then and it was fine. But, this is my first experience with LE in the arm.
Thanks, Faith (in the future).
Feb 15, 2017 03:18PM MinusTwo wrote:
Faith - we are all at risk always. If you choose not to wear compression when flying, you could exacerbate the LE or it could progress. Or then again you could luck out & nothing might happen. Personally I haven't been willing to take that chance since it's a known serious risk. It doesn't sound like your taking an immediate trip so you have more time to research LE and figure out what will work best for you.
Feb 15, 2017 04:20PM Beachnut wrote:
I have slight lymphedema in my arm - I tried the compression sleeve & it just made it worse. Told my P.T. & she said just quit wearing it. I was flying to Hawaii & was worried about making it worse without one. I was just fine. I still have lymphadema & have flown several times since then...no problems. I haven't flown for more that 5 hours though - good luck!! I hate it too.
Feb 15, 2017 05:44PM dsgirl wrote:
Faith, have you tried turning the sleeve inside out so the rubber bumps don't touch your arm? Just a thought.
I always wear my sleeve when flying or taking a long road trip, would not dare to go without, but we all react different to LE.
Feb 15, 2017 07:10PM - edited Feb 15, 2017 07:11PM by Faith-840
Beachnut, In what way did the LE get worse wearing the sleeve? Did you hand swell or your upper arm or your breast area? I seem to be having more swelling in the breast area.
Dsgirl, I did try turning the sleeve inside out and it didn't itch but it kept sliding down a bit and I didn't think that was good either. This is all still new to me. My airplane trip of about 5 hours is happening in May so I've got time to try and figure this out, hopefully.
Feb 15, 2017 07:56PM - edited Feb 15, 2017 08:12PM by hugz4u
faith. Get the glue called " it stays."I'm sensitive to the glue but find Amoena is the friendliest product for my skin. There are many "it stays"products but try the company listed above.
For anyone that has a touch of LE that means you have it for life even if it seems to recede. Anything can progress it for life.
For instance mine started in my arm and hand then slowly advanced to the trunk and finally in my breast but only slightly puffy at times. I can feel breast though and sometimes it pinches so I know it's there. Think chicken quarters. Hand arm breast trunk are all compromised if axilla nodes dissected. Some girls even get le just from one node taken out of their breast during surgery. Not often but it does happen.
Think of lymph system as your plumbing in your home. If one pipe breaks the rest don't work properly. Le is faulty plumbing.
Wear a tight compression tee or compression cami if you have it in your trunk or breast when flying.
If you have subclinical or early stage you can reverse it so being proactive is so much better than dealing with the le beast down the road when it's late stage such as I saw a unfortunate case at my therapist today. It was a man with swollen legs and he could barely walk on crutches. He looked like he was in so much pain. I almost cried to myself.
Keep asking questions. If you think your therapist or fitter is not qualified then switch.
Beechnut if your therapist said get a sleeve then said don't wear it if it's causing a problem then it's not fitted proper. You might want to look into fitters qualifications. She should be able to have you wear sleeve comfortably. Slightly swollen arms are usually very easy to fit. It's irregular arms that are difficult usually or conical arms like mine. Off the shelf garments don't always fit nice. Custom isthe way to go.
Feb 15, 2017 08:02PM MinusTwo wrote:
Faith - by all means get a compression bra or T-shirt before your flight. I might forgo my sleeves for a car trip, but I wear my compression bra 24/7 now that I've found one that is comfortable and even sort of attractive.
Feb 15, 2017 08:26PM Faith-840 wrote:
Do all of you have a favorite brand or brands of compression bras, shirts and camies? I think it would be hard to find the right fit for a bra online. My therapist seems competent and she is the one who seems to be the specialist at the hospital affiliated place I go to but she did not fit the sleeve. Someone comes in from a company who sells them for the measuring and fitting. The first sleeve was too tight and I exchanged it for the next size up and it seems a little long for me. I'm only 5' 1" and I guess my arms are short for the standard sizing.
The therapist told me to look for a sleeveless compression shirt at a sporting goods store but I didn't find any here in the winter so I gave up. I asked about a tight sports bra but she said no to that idea. I guess I'm in denial a bit but now that we are flying in a few months I'm getting more concerned.
Thanks everyone for your help and ideas.
Faith (in the future)
Feb 15, 2017 08:35PM MinusTwo wrote:
I can't remember the name of the T that was designed with the help of some women here. Hope someone will post the link for that nice company.
Sports bras didn't come up high enough under the arm pit for me, nor had enough coverage across the back. I first bought a heavy duty Belisse compression bra at a medical supply place. Now I buy the WearEase 'Sydney bra' since my LE therapist says it comes up high enough under the arm & up the back to do the job for me. Wear Ease also carries lots of other compression garments you can review. Link below
Feb 16, 2017 05:37AM doxie wrote:
The company's name for the custom shirt was GO Athletic Apparel. When I google the site, I find what may be a new version of the company - it got bought out, reorganized, or ??? I'm not finding the travel clothing that our custom shirts were developed from. The women's compression shirts may work for some with truncal LE, only. I find I needed my axilla compressed and a sleeveless shirt/tank made things worse.
One thing that helps is to wear compression garments inside out. This way seams aren't cutting lymph flow or irritating the skin.
Good luck. It can be a challenge to find what works for your body type, LE location, and how LE responds to different levels of compression. LE ain't fun.
Feb 16, 2017 06:56PM Faith-840 wrote:
Thanks to both of you for the ideas. This is a real learning process. I think the reason the therapist said no to a sports bra is for the reasons you stated minus two, not high enough under the arm or around the back. I'm going to have to make a real effort to find something soon. It's just that there's so many things to manage with this cancer, meds and side effects and dr appointments, etc. I just want to stick my head in the sand sometimes.
Faith ( in the future).
Feb 16, 2017 09:37PM tsoebbin wrote:
Im not certain this will work for everyone but my PT had me try a bandeau bra. It's helpful with gentle compression on my back and underarms. I didn't have Reconstruction so I don't need support.
Feb 16, 2017 09:45PM Kicks wrote:
Faith - You asked about compression garments causing LE to be worse - well for some they can IF they are the wrong compression level for us individually.
Some need higher compression to keep swelling down. Conversely, higher compression levels can cause swelling for some of us.. Some of us are more sensitive to pressure and increased pressure can actually cause swelling. That's why not only is the correct fit important but also the correct compression level.
I have to have low compression or hand (especially) and arm puff up 'big time' within 1/2 hour. My first garments (7 yrs ago) were mid level - bad. So we went to low level and worked great. A yr ago, my LET guy decided should try higher compression as after yrs it might be better now - WRONG! Same as originally - major swelling quickly. At least he had only ordered 1 heavier set (I get 2 new sets every 6 months). Also my garments have to be custom as OTS garments are not designed to fit me. Especially gloves - I have Syndactyl (webbed fingers) so gloves that are 'normal', literally cut into the webbing between my fingers causing open sores thus PAIN!
Have no input regarding trunctal LE - don't have it to deal with.
Feb 17, 2017 05:05AM cliff wrote:
you think you hate lymphedema, mine is on the left side, and I am left handed. big fat sausage fingers are hard to type with and most anything else.
Feb 17, 2017 11:03AM glennie19 wrote:
For those with truncal LE,,, you may want to check out the products at EAB Medical. I basically live in their breast binder combined with a swell spot wrapped across my chest and my armpit area. I am a uni,, and I have not ever found anything else, compression bra or compression tee, that worked for me.
Feb 22, 2017 04:54PM Wholenewworld wrote:
I have breast and truncal LE with the bonus of having had major intestinal surgery just over a year before this all happened. I have tried almost every product out there as sports bras don't work (Bellisse, ABC& Ameona vests, WearEase bra and tanks, lined Binders , Go Travelwear, Asset Spanx/Maidenform tanks and almost everything on step up page) and cant find anything that I can wear for more than 4 hours during the day. It's impossible for me to get support and compression that doesn't bother my stomach area. I was also sensitive to fabric/seams, even before rads. I wear 2 youth large under armour tanks to sleep, I just had to cut the neck area a bit to fit my head in! I also tried wrapping but that is an art I have not mastered yet. I alsotried the compression pump but it was too aggressive even after being adjusted by someone at the company. It didn't help much either. Even my therapist is at a loss on garments at this point - and she's great!
Since many of the products I tried were suggested by the caring people on this site, I just wondered if anyone had any other ideas on products?
Trying to hang in there (literally hanging -lol)!
Feb 22, 2017 05:54PM doxie wrote:
I feel terrible for those of you who cannot find relief for truncal LE. I did and feel so lucky. Is there not a seamstress among us who could volunteer to sew custom made garments for the cost of material and a small fee? I wish I was retired and had a sewing machine to replace my '50 version Singer that hates knits. I'd do it! We have dedicated tattoo artists, can we find a seamstress in our group?
Feb 22, 2017 07:52PM tsoebbin wrote:
I too am struggling with truncal, breast, back and bilateral arm LE. I'm finding that I sometimes have to change whatever I'm wearing midday. Today I wore a bandaue bra for compression. I didn't have Reconstruction, so it's quite a challenge! If it bothers me I can change into a wear ease, a binder, or sometimes even a 6"ace bandage!
Changing things up is all that works for me.
It's a pain but I'm starting to see improvement.
Feb 22, 2017 08:11PM - edited Feb 22, 2017 08:15PM by Wholenewworld
doxie and tsoebbin:
Thanks for the responses - it's nice just to have people that understand. I
I was looking for a good bandeau Bra to try! They are hard to find. I just got a EAB lined Binder and I can wear it for a few hours before the outer fabric bugs me under the arms. Please let me know what brand it is if you like yours.
I would love to find a seamstress who could work with any compression type fabric! I have not been able to find one yet.
Feb 22, 2017 08:41PM MinusTwo wrote:
WholeNewWorld - so sorry that you're having such a hassle. I keep up with my MLD and try to get regular exercise. I wear a 'Sydney' Wear Ease bra 24/7. I have a heavy duty Belisse bra for travel but that, like you mentioned, rubs sores under my arms. And I try to wear sleeves when I'm doing repetitive things. I still don't always remember, but I pay the price if I don't
Feb 22, 2017 09:09PM Wholenewworld wrote:
MinusTwo - Thanks. I do my MLD daily and 30 min on treadmill everyday (have to walk being on Tamoxifen!) Even the Wearease bras hit me in a weird spot. I can wear it in the morning for a few hours, then I have to go to a tank. I just keep changing when I need to. I always carry an extra option in the car. Hopefully it will improve over time. Im just8 mo. post rads.
Feb 23, 2017 05:01AM doxie wrote:
I found the site for the compression shirt developed by GO Travelwear along with bc.org gals. http://www.gotravelwear.com/shop/womens-compressio...
This worked for some of us.
Feb 23, 2017 06:05AM cliff wrote:
don't you hate having to buy two pairs of gloves and throw one away from each pair? one size for the normal hand, and one for the "lobster claw"
Feb 23, 2017 07:26AM - edited Feb 23, 2017 07:29AM by Wholenewworld
thanks doxie - I ordered that a while ago after reading about it here. Its ok, Just not enough support to wear alone for any length of time. I wear a C/D in most garments.