GRRRRRRRRR I HATE LE..........
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PVM -
In my opinion - you need to be seen by an LET (LymphEdema Therapist). This is someone (usually a PT or OT) who has additional education with LE. You did not mention the RN giving you any info or how to do MLD (Manual Lymphatic Drainage).
Different levels of compressions are needed by different ones of us. Some who do deal with LE need different levels of compression. There are different levels of compression garments for this reason. The wrong compression level can cause big issues. For me, I have to have low (18-21) compression as any higher causes major swelling (especially in hand which normally has no issues). Others need high level compression and most 'fall' somewhere in between.
Glove (or gauntlet) should be worn when a sleeve is worn rather or not swelling is an issue in hand. A sleeve will compress the arm and without similar compression on hand, fluid can 'drain' to hand.
There are so many variables when it comes to how we individually do/have to we deal with our personal living our life with LE. For me, what 'works' great for me in living my life to the utmost I can/do is not what can (or want to). That doesn't mean that what works for me wi for anyone else. BUT you do need to gain more education/information about LE (what may help) and with time you will learn what will be best for you - IF you do have to deal with LE
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PVM - I second what Kicks says. You need to see a trained LEPT. I have truncal & breast LE. So far I've managed to keep it from spreading to my arm. I wear a compression bra 24/7 and wear a sleeve & gauntlet with traveling or doing new repetitive tasks or exercises. In my opinion it's not worth taking a chance having blood drawn from my arms.
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Yup! As MT said no blood draws from surgery side. Also no BPs or vaccines in that arm - not worth taking a chance.
I do deal with LE 24/7. I wear my day garments basically all the time I'm 'up'/active, my night sleeve at night and use my FlexiTouch (a machine that simulates MLD - Manual Lymphatic Drainage) daily. When you saw the RN if she is also an LET you should have been taught MLD massage.
My LE does not slow me down or keep me from doing any and all 'things' I want to do (and do) in my very active 'outdoor' life.
My LET Guy is an OT. He is fantastic and I have been a big challenge to him. Not only dealing with my issues of compression level but getting my gloves that I can wear without the webbing between fingers being literally cut open (hurts bad) by OTS (Off The Shelf). Turns out I have syndactyly which is webbing between fingers. Mine isn't as bad as it could be but enough to cause issues with gloves. My LET guy was really diligent in figuring out how to make the measurement points 'work' for me and finally did get it figured out and now he just orders 2 new custom sets for me every 6 months.
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Thanks so much Kicks & MinusTwo for your thoughts & opinions they are very appreciated especially with the fact i do not know that much about LE & need to get up to speed & learn more. The nurse did not show me how to do MLD. She did give me a list of certified LE therapists & suggested i make an appointment to see one & ask if they can show me how to do MLD myself. There is one that is 10 mins from my house so i will be making an appointment to see her asap & get her to asses me & so forth. The good thing is that this place is also registered to order garments as well. Regardless if it is LE or not i will order my garments as i hopefully plan on traveling next year to celebrate life once i am done my treatments & kick cancer in the butt. I normally do a tropical trip every year & i hope i am able to do that next year. I am glad to hear that LE does not slow you down or keep you from doing things you want to do Kicks as that was one of my worries. I wont let it get me down & continue to stay positive, especially since i still have radiation to conquor.
thanks so much ladies.
P.
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PVM - this is a wonderful site that a number of BCO members were instrumental in getting it going. It may answer some of your basic questions.
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Got an Answer about vaccines - They can all be done at the clinic in the leg. Some of them can't be given in the hip. And unfortunately for me - I only have a month to get them so insurance pays for them
I wanted to spread them out.0 -
Gma - well at least you got an answer & it's possible. I've never had to deal with a battery of "overseas" shots. I hope you have mild side effects.
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Just found out they don't do the yellow fever - so I will have to bite the bullet and have that one in the arm - hopefully nothing will swell.
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Can you purchase the Yellow Fever vaccine and have your PCP or your infusion center give the shot?
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No they won't do that - They don't want live viruses like that in their clinic. We don't have anywhere else to get it here. It is also not allowed to be given in the hip or thigh for some reason. Only arm.
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Just want to stop by and say Hi to everyone. I’m wesring my sleeve good 6-10 hrs and one hour Le pump. Want to control my Le before radiation.
Hope everyone will have a good week and keep up with the exercise!
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Paulette. Good your working up slowly with your sleeve wearing length. Don't forget if your inner elbows feel rashy then fix the problem asap with Body Glide brand of anti friction stick. It's the one running stores or athletic storecarry to stop chafing.
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Well got my tetanus and hep A & B vaccinations yesterday - Nurses tag-teamed me - had me lay down and they shot me in both legs at the same time. A bit achey this morning but survived. Still will be getting the Yellow Fever vaccine in the arm that isn't supposed to be LE. That won't be until after the holidays.
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Hugz I got the Body Glide stick from Amazon, I always listen to your suggestions. I started my radiation today is my first day, I wore my sleeve plus I used my pump. I just loosen up the chest piece, I’m hoping I can use my pump on all my treatments then I wouldn’t have Le problem.
Gma - you are ready to go soon!
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Paulette. Body glide is so helpful. Another thing I do for my sensitive inner elbows is put silicon scar tape on the crease. I like it even better than body Glide but it's expensive. The brand I get is from rite-aid pharmacy called scaraway. One strip lasts about two weeks that is if I don't wear off the sticky part with my finger when I put it on. I rotate products to use.
I have no pump experience so I'll be learning from you girl if I need one!
Your chest may get rad burns.i had 35 days in a row. After about 14-20 days ( can't rember.) my skin didn't like it. Do what doc say and put on the creams they recommend. You don't want to get a infection so keep area clean if you blister but don't overkill!. I had the most radiation with boost a person can get so that is why I had not the best experience. Hopefully you will do better. Otherwise rads was a breeze compared to chemo. Well you will feel tird. But hey aren't you already! Uh hate hate cancer grrrrrrrrr
Soon you'll be over the hump!
GMA. I'm picturing nurses holding you down like a cattle rancher branding his calves. Yikes! Glad it's done
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Hugz you made me laugh - thank you - had a migraine yesterday, feeling better this morning. Think the worst of the vaccination experience is over. It was a surprise by the way when the nurse told me to lay on the table and they both got on opposite sides of said table. It really wasn't bad.
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Hugz, I couldn’t believe you don’t use pump ... what a surprise! I will check into silicon tape, you meant one strip last’s about two weeks, hard to believe you can reuses it over and over again. I’m using my pump daily even I’m doing radiation. According to my RO I would be okay to use my pump for the first two weeks, after two weeks we need to see how my skin react. I’m thinking if my skin gets sensitive, I still can use my trunk piece, just don’t use my arm / chest piece. Yes I hate hate Cancer ... can’t go back to the time we didn’t have cancer.
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Paulette. Not everyone uses a pump. I feel well managed without one. I may need toone day but not now;) yeah!
I don't know much about pumps but make sure you are using it properly.im not sure if you can only use pieces of it to use correctly. If you have questions ask your therapist or phone pump company. Kicks uses a pump maybe she will tell us if she comes along or PM her.
Your doing good Paulette. Keep pressing forward. Youll get rads done soon and turn another page in life.
The Silicon scar tape i use is about 3 inches long one inch wide. Yes I can get two weeks out of one strip on inner elbow. I try to not touch the sticky sidewith fingers too much. There are some brands that you can only use once. Package should say reusable.
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Ladies was hoping to get your opinion/advise. I shall be going back to work soon & wanted to know as im high risk to get LE do you think i should wear a sleeve during my working hours. I recently got one to use while exercising & to use for traveling hopefully next year & i honestly don't mean to whine as im truly grateful to be here fighting the good fight but boy is it hard to put on not to mention feels a bit uncomfortable too, i have not used it too many times yet & i know i will get used to it but still it takes a bit getting used too. My work is pretty much office work (computer/typing/phone) & they are putting a desk that can be lifted up to work when i need to stretch my legs or just sit & work. Thanks so much for your guidance ladies, i know its the new normal & slowly i will get the hang of it & just wanted to say im grateful to be able to have this site to ask for advise & talk to ladies that are going through the same situation i am going through.
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PVM - I do not use a sleeve & glove for regular office desk work. Although I do understand it's recommended if the task is repetitive. I don't know if that would mean computer keyboards?? I do know that you should take 10 minutes every so often (every hour?) to stand up & pump your arm. Someone else more knowledgeable them I am will know how often you should break. My PT did say on long drives I needed to stop, get out of the car, walk around & pump my arm every two hours.
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PVM, I’m getting use to wear my sleeve, I would suggest maybe you can wear it for few hours a day to break it in. Best is to ask your PT. I usually need my husband helps to put on a sleeve after it washed on the first day. After that I could put it on myself. It isn’t easy but I managed to do that.
Hugz, will look into the Silicon tape. I spoke to my PT, she was the one who taught me to use the trunk piece if I my skin got sensitive.
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Paulette 
pmv. My therapist had me only wear while exercising and air travel until I got le. See what your therapist says. If you find your arm is getting tired achy then tell therapist while working on computer. You may need to wear it working hours if your doing repetitive work. But you don't have le so your will need to see. Girls. For getting that garment on. Order a slippy from brightlifedirect.com. Here's a photo. We can use it all by our selves and its sooooo easy to use. Works like a charm. Mine lasted about five years. 25 dollars. Also medieven has the best donning gloves to smooth out the wrinkles once sleeve is on and makes the compression even. Under ten bucks I think, this makes life easier.
You need gloves or gauntlets too not just sleeves to avoid fluid build up in hand.
Paulette. Good you talked to therapist about pump use. Smart!
Paulette:I Edited to add pic:here is my silicon scar tape for stopping chafe in inner elbow.
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PVM - I elevate my arms and keyboard on a pillow. I find I don't have to wear my sleeves and gloves while I do computer work, but I do put my hands in the air every once in a while and pump my hands a few times. If they start to ache, I put on my sleeves and gauntlets.
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PVM: how great that your office is putting in that type of desk. I would talk to your LE therapist about the type of work you do, and how repetitive it is. My job is 8 solid hours of computer typing,(no answering phones, or filing, just type, type, type,) and my LE therapist feels that is repetitive enough to be a risk factor. I do stop and get up and walk around, and pump my arms in the air, etc. You may not need the sleeve,, or maybe for a few hours a day,, but I think your LE therapist could help you with that.
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Ladies thanks so much for your advise & opinion. I have an appointment with my PT tomorrow & will ask her what she suggests, i am trying to avoid LE as much as possible i know that if its meant for me to end up with it well so be it but whatever i can do in the meantime to minimize the risk then i shall do it.
Glennie my work is great they want to make sure i am comfortable & my health is good when i come back so they are putting this desk in for me. The also have no issues with me getting up to walk every hour or go to the water cooler to get some fresh water or anything like that so i should be able to get my hourly stretches in & stretch my legs & arm.
Hugz thanks so much i will look into getting one of these from the link you provided. Anything that can help & make things easier is always greatly appreciated.
MinusTwo thanks so much i will definitely do my every 1hr fist pump. My job is not that repetitive or non stop typing which is a great thing.
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Hugz ..... you are so kind to me, thank you! Spoke to my RO today, she wanted me use the trunk piece only, she doesn’t want me to irritate my breast. Meanwhile I just do manual massage. I learned about lymphedema from you, I rather do more preventive works so I won’t be sorry. As my PT said I did well on prevention then I shouldn’t have problem in the future. At least I known what to do.
PVM, I’m with you, I’m trying to avoid LE as much as possible also. Hugz knows a lot about Lymphedema, I always come here for advice.
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For the first 18 mos or so I had no symptoms, and then I took a flight to Cali. I wore a sleeve but no gauntlet and I noticed my hand was swelling . I had just flew to Paris and back with no issues using just the sleeve. Now I can't seem to get it to get back down. I went to a PT and they would wrap my arm. I wore the wrap on my days off and then I started wrapping myself. I did that every night after dinner and slept with it, taking it off in the morning for work. It got my arm down, but not enough.
My PT had the girl from the pump company come and let me try the pump. It was great, but it looked like the old fashioned home hair dryer with all the hoses, and when I checked, I didn't think my insurance would cover it. I have new insurance now and I am thinking about looking into it again. I believe it is very expensive, but I have an HSA account that helps pay for the yearly deductible.
A couple of things - how expensive is the pump? Has anyone tried or know someone who has had the LVR surgery? I'm afraid I've had too many nodes removed and it won't help me, but I'm willing to talk to a doc about it. My PT told me with the number of nodes they removed, it wasn't IF I was going to develop LE, but WHEN. I'm growing very tired of not being able to wear shirts in my closet.
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Paulette. Actually your teaching me because I know nothing about pumps so thx for educating me. Also I suck at MLD and shy away from it. I do lebed method (tai chi type exercise to drain lymph) instead. MLD is better though.
Homemom. Yes hand protection is needed because the fluid will just hang out in the hand when it's not compressed. Just a sleeve is not ideal. I'm flying for the first time two hours with glove, sleeve ,compression tee. I'm chicken to fly with le but gonna bite the bullet and start living again!
It's possible your arm was a perfect storm waiting for any kind of flight length or perhaps lugging heavy baggage to set it off even though you flew to Paris with no problem. You may never know. You probably have had early stage for a while and then poof! The nasty le beast reared his ugliness. let's move forward and try to resolve this.
Ok not just your arm needs wrapping but fingers also and this must be 24/7.just take off for shower. Usually you get CDT daily for about three weeks from therapist which is drainage then sent home in wraps. She should teach you how to do manual lymph drainage. MLD.
Good for you for learning how to wrap. It's such a steep learning curve and I've used it in emergencys or when I over garden and my arm feels cranky. Every single person with le needs to have this skill in their le toolkit.
There are threads here on node transfer. For me...I'm interested but still view it as to new to try. Some of our brave le did have done it and we thank them so much for breaking the ice and reporting about their experiences.
Ok Friday im on holidays and will disappear of the map. So take care all.
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Hugz, I do the Lebed exercises instead of self-MLD too, because try as I might I never got very good at the MLD, and the Lebed actually works wonders. So I'd say self-MLD is not necessarily better for everyone. What's best for each of us is what works, and what we're willing to commit to. That differs for each of us, and it can differ over time for any one of us, too.
I have a huge GRRRRRRR! today. Every year I order my WearEase compression camis from Hanger (prosthetics/orthotics place) and they're coded as my mastectomy bras (which they are, and the only kind of mastectomy bra I can wear for that matter). This week when I ordered them the manager called back and told me in no uncertain terms that they would not be covered--they're "too expensive" (well, duh!) and Medicare doesn't cover compression garments (which it doesn't) so they didn't have to provide them for me.
Now, I've lived for several years with insurance that is unwilling to pay for sleeves, gloves or stockings for my LE, but considering that they do claim to cover mastectomy bras, this just....well, GRRRRRRRRRRRRRRRRR!!!
I shall of course appeal, and I'll keep you posted if I get anywhere with it.
GRRRRRRRRRRRRRRRRRRR!
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Binney. Grrrr dang for sure. When appealing, Can you take pics of the wearease showing the pocket prosthesis hole(proving it's a masectomy type bra) where prosthesis nestle into and your prostheses beside it so they see that this is a masectomy bra. Also a summary of your last claim form showing that they indeed did cover them before. I almost wish we were brave enough to submit a breastless pic of ourselves to!
I wonder if there is a charity that helps with masectomy bras?
My insurance covers two bras which I don't need yet but only 500 for sleeves and gloves a year. Well one custom set is 750 in Canada. Go figure. I need at least two sets a year. Bare minimum. I called my insurance plan and they said that my husbands company didn't get the upgraded plan for their employees. Ugh. Grrrr to.
Insurance companies make appealing so stressful that most of us give up. I hope you don't
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