Trunk LE- Suggestions? What works for you?

proudtospin

I use a therapist who works out of the same hospital where I did my radiation and where my MO is located

since I have never used anyone else, guess not a good comment but I adore her!  saw her at beginning when the bS recommended PT and well, tried to continue the massage.  Never asked her if she is lANA certified to be honest

called her last week as I was worried about possible cording junk.  She was great, reassured me, took my measurments and we both ended up thinking it is pain in arm caused by...my crummy posture!  I have no swelling and the left arm is smaller than the other.

I guess you need to find someone you trust and can believe in.

My other comment is that I would not be comfortable buying bra on line that I can not try on, I need to try on first!

Cindyl

proud... If you buy from Amazon (not necessarily from their affiliates) you get free returns.  Just click the link that says return it.  click the box for too big/too small or whatever.  Put it back in the package that it came in.  Print a new label and RA add a little tape and it's on it's way back... and no time in the fitting room.  Course it was an easy choice for me because  none of the local stores seem to carry anything bigger than a 38D, and those haven't fit since 9th grade.

proudtospin

Cindi, guess I am lucky as I live in NJ and have a Hanes/bali outlet store near me as in next door to my other fav stores.....fabric store and my bike shop!  I know, I am wierd but that is my fav shopping area, I have for years bought all my undies there and know that while one brand works in one style, not another

guess since the therapist approved the fit today of my bra, will still with it

I do confess was worried if she would say I should have gotten a dif sort of bra but now, comfortable

purple32

"Purple, my therapist is not LANA certified either, "

Very encouraging, Binney. Thanks.

Appt is about 3 weeks out.  I sure will keep all updated.

Cindyl

proud - jealous!  Whenever we go to visit my Aunt & Uncle I hit the Haines/Bali store and the Easy Spirit outlet next door.  But that's about an 11 hour drive so we don't make it often.

DianaNM

Connie, good idea. But DH is the only one that would do that for me, and his hands are just too strong. He would hurt me, but with the best intentions. I think I will keep paying this lady as long as I need to. She has lupus, so she might have to quit on me before I quit her sadly. But she trained at the Vodder clinic in Austria in 1994, and in the last 18 years has seen it all. She spent 2 ours with me today and just charged me the $60 per session fee. What the "lymphedema therapist" at my hospital did does not even come close to what this lady does. 

She told me to start skin brushing, and showed me which way to do it. That would cut down on the sessions, I think. But of course, I do not remember the patterns. I am seeing her again on Tuesday, so I think I will ask if I can video her instruction.

She also told me not to worry too much about compression yet. It will be important when things get moving, but right now everything is stuck.

I got the bolero bra today, thought I canceled the order. Guess I will try it on tomorrow and see how it feels.

At any rate, I am feeling much more optimistic that I might get more towards normal one of these days! 

FireKracker

Still lovin my camis from NY&Co.I cannot buy a bra without trying it on anymore.

Bought first 2 for 30 bucks.then went back to buy 7 more.with coupons and discount it came to about 10 bucks a bra.24/7/love,love,love them and it comes in all colors too.

But ya gotta try them on....35DD amd im a small.....fits like a charm

I too spent a fortune for all different kinds of bras....none worked.Thank you God.

And thanks to my good friend who drove me to buy the first 2.

hugggggggggggs everyone K

Dejaboo

glad they are still working great for you Grannydukes.  I have not made it over to the store to try 1 on. 

I must have about $1000 in bras, etc in the 4 years since my reconstruction nightmare started.  : (

I too do not buy clothes on line...Unless I have tried the same thing on at a store...Then I might try to find it for less on line.

Connie07

TGIF & hi all, l slept til 11:30 and now am having coffee on the patio with the cat and visiting hummingbirds. Its almost cool out but warming. Gorgeous! My back yard is my refuge.



It surprises, puzzles and comforts me that my LE learning, so far, is very similar to some of you.



Diana - yes, about the DH. I was warned that men tend to be more aggressive, (Hhahahaha, that cracked me up.) As long as they have testosterone they will be more aggressive than most women. But i know what you mean cause mine is the same way. Plus hes pre-occupied and doesnt pay attention unless its a thing he wants to do. Kinda sad, really. Your lady sounds like a divine gift. How did you find her?? And please let us know how the
bolero works.



If we could add to the fight for LE recognition, we should target husbands, sisters, bffs so they get better informed and can actually get involved.



Cindyl - l hear ya about the local stores and their sizes. BLECK-- to them for not helping support the swollen ample bosomed woman. Its better to go only to stores that carry Plus size
everything, or one that even puts those garments within reach instead of the back of the bottom rack so you either have to bend way down or actually squat to see if MAYBE they still have one in my size! I like but cant afford most clothing at Lane Bryant and found their outlet in St. Augustine, Fla. Thats a long way to go, but they have outlets online too. The shapewear isnt the same.

And we are in the same place with starting to get the fluids moving. Therapist does it so much better than l do, l hurt after she does it, several hours last night and l didnt sleep much.

Thanks for the amazon suggstn. Wouldnt have thought of that.



Hey Grannyd, where do you get your NY&co garments? I dont know them.



ProudtoSpin, a Hanes outlet and a fabric store sounds like perfect shopping for me. As long as they carry beads. I sew, embellish, make beaded jewelry, generally crafty.
I did find a Hanes lightweight, no wire,bra, perfect for under commprss cami. Im just not looking forward to mulit layers, thank goodness the weather is turning.



Thanks to all for sharing. IT HELPS SO MUCH!!!!!!!


Connie

DianaNM

Connie, I googled the therapist. I had seen her name several times and knew she didn't take insurance. I was trying to find someone to go to that took my insurance until I came to the conclusion that not only is there no one on my plan that I could go to, there was no one in my city! So I googled her name, lymphedema, and my city, and got a current phone number for her. If they've moved a couple of times, the internet has the old information forever.

The oncologist today gave me a "statement of medical neccessity" for this therapist, so after I have a few receipts for her, guess I will try sending that in. Not counting on any luck with it.

And I do seem better today. Hooray! 

Oh, and the bolero thing hurts. My arms, mostly, and I think someone else said that. 

Binney4

Diana, can you cut the sleeves off and make a kind of cap sleeve out of it, maybe?

You might want to fight it through with your insurance from the beginning, rather than waiting until you have bills. If you have medical necessity for a specialist and there's none on your plan, they do have to make some accomodation (out of network), especially in view of the Women's Health and Cancer Rights Act. If you fuss with them beforehand you can even give them the name of the therapist you want to see instead of them finding one that's less appropriate for your needs. Just a thought.

Be well!
Binney

DianaNM

Thanks Binney, I will do that. I'm a little worried that there is an LE therapist on the plan. I saw her several times for a $75 copay each time. She was very nice, but the one treatment I got lasted maybe 15 minutes and was concentrated on my arm. I went home with very nicely lotioned arm, but no effect on my torso swelling.

purple32

Since medical costs and INS covergae has come up, I wonder if any of you with breast LE  have asked for MRIs rather than mammos and if they are covered due to breast LE?

Cindyl

Got my vest. Fits good.  Taking it for a test drive, we'll see how it feels after a while. Feels good so far.

purple32

RE:  SALT

If I may ... I am supposed to eat extra salt ( have  a problem with hypotension). 

 Well, yesterday , I had a  ton of chips ( Nope, NOT what the DR meant!) and today my rings wont fit, and I look like I am pregnant!

HELP!

In the past, ( before LE) I could eat salt constantly, and  always have in order to maintain my already low BP. NEVER EVER  noticed even a tiny bit of swelling.  It's obvious I have  a new problem now... how to get the sodium in , but keep the fluid retention  out.  I could never take  diurectics ( btw, does this help LE?) due to my hypotension, but I just want to know this :

HTH can I get rid of " yeserdays salt "?   and asap!

THX, Ladies

Cindyl

I don't know how you can get rid of yesterdays salt, but I can tell you you aren't alone.  I've been watching the sodium, and the days when I get a bit more I gain weight, doesn't matter what the calorie count was. 

Connie07

Drink LOTS of water. LOTS, ask about drinking electrolyte replacement drinks rather than salty snacks. Not nearly as tasty or fun but maybe much better for you.

I use a powdered water additive that says electrolytes and no sugars.



The other choice would be to sweat it out.

carol57

Diuretics are not good for LE. They remove water but leave lymph's protein behind, adding to the problem of too-thick fluid that is a perfect growth medium for bacteria, and thus cellulitis. I hope Binney will correct me if I got this wrong, and/or there are other reasons diuretics are inappropriate for LE.

purple32

OK...water it is. THX! 

 Good to know about the diurectic. I cant take them anyhow, but I did wonder why you ladies didnt !  ( too simple)

Electrolye s?  Hmmm...I used to have my husband drink POWERADE ZERO ( as opposed to sugary Gatorade ) during chemo, but wouldnt I STILL be getting' Too much ' sodium for LE?

OK, I have to say , my life is beginning to feel like a (NOT funny) joke these days.

I thought my cancer was the most " catch 22" thing  I could imagine.  Arimidex ?  oopoops , you already have bone disease .Better not !

Radiation?

Ooops, not with YOUR lungs ?

LE?  Impossible- no rads  and only SNB -2 out.

HA!

Low salt ?  OOOPS....you have hypotension?  ADD salt!

OOPS , you have LE!

Calgon, take me away ... oh wait, a good warm bath is not the right thing with LE is it ?

KS1

Has anyone tried the MeMoi short sleeve shaping cami for truncal compression?  A year or so ago, I tried some of the MeMoi products and found the sizing to be inconsistent across product lines.

Here's a description I found online: 

MeMoi Shaping Cami with Short SleevesTames and tones your tummy, back and love handlesMake your upper half your better half with SlimMe’s Shaping Cami with Short Sleeves. The slimming compression lifts and enhances your bust with seamless soft cups as it smoothes and tones your tummy, back, love handles and arms. The seamless, tag-free construction provides optimal comfort for all-day wear—and you can also wear it as a t-shirt with your favorite bottoms! 90% Nylon, 10% Spandex Solutions: Bust Lifting, Tummy Control, Hide Back Fat, Arm Slimming, Waist SlimmingStyle: #MSM-130

From the SlimMe Collection By MeMoi 

http://www.legluxe.com/product/shapewear/body-shaper/shaping-camisole/MSM-130 

purple32

KS1

I'm not getting anywhere with the URL- seems to be a  broken link (?)  but I have not tried these. Perhaps someone else will chime in.

On another note :

Rings no longer fit. The worst part is the ring on my RIGHT hand does not fit either !  Its nothing anyone else would notice (yet) and I did do the  LE self  masage from youtube last night which helped the breast area.

Oh...I have answered my own question on 1 thing - no way will I be getting a  DX mammo.  Cancelling that appt. on MON. This should make life with BC more interesting!

Tell me ladies ...with this  " ring thing" - am I in big trouble ?

purple32

Connie07

I just read your post, and I can SOOOO relate !

I DO think I did this to myself...lowest risk possible.  NO RADS and a SNB with only 2 nodes out.

All I was told was this :

"Dont rake or vac for 3 weeks ----no repetetive arm movements."  ( for 3 weeks) That was it !

Why not give us all a 1 page damn post op instructioin that tells us of the lifetime risk with a bulleted list. Is that so hard ?! 

How dare I think I was getting ouit of BC with a simple LX and no radiation or hormones etc ... nada. Not with this. No way.

KS1

Mayve reinserting the original link will work:

 http://www.legluxe.com/product/shapewear/body-shaper/shaping-camisole/MSM-130

In case it doesn't, here's another link to a different site.  Doesn't have the side & back view, but the price is less ($36 vs. $45):

http://www.hosieryandmore.com/memoi-slimme-shaping-short-sleeve-cami-msm130-p-6145.html

WRT rings, my wedding ring also doesn't fit on either hand, which is especially telling because, pre LE, I wasn't able to wear it on my non-affected hand because it would fall off).   I vaguely recall a while back someone posted a study that showed over time, for some people with unilateral LE, lymphatic clearance in "non-affected" side gets compromised/overtaxed.  Carol, was it your report on the NLN conference presentations? 

 KS

purple32

Thanks, KS1.

The link did work....looks good, but I still have not had personal experience with it.

As for the " Over time ...." Geez,  I am only 6 mos out from LX, WTH will this be like in a yr??
I shudder to think .

Connie07

Im confused on the diuretics and electrolytes.



I dont take diuretics and l dont cook with or add salt to anything unless its grits and if lm home l use a 33% less sodium salt. (try to find that with iodine).

I do add electrolytes to water. It keeps muscles from cramping, ie: legs.



Just got a G2 bottle and a Crystal Light Pure fitness w electrolytes and found..

The Pure mix, Per pak with 16.9 oz water has 2 servings =

70mg sodium, 30mg Potassium, 6g sugars, 30 calories.



The G2 Low Cal. 20 oz bottle has 2 1/2 servings =

270 sodium. 75 Potassium, 12g sugars 45 calories.

Wow.





Do the two have something similar or an opposite reactions?

Cindyl

I ordered the Memoi from Hosiery and More.  Two problems so far.  First you have to order 3.  OK the price is OK, so I guess...  2nd - I placed the order almost a month ago and the camis haven't arrived.  I emailed them to inquire, haven't heard back.  I'll keep you posted.

carol57

KS1, There was a study released in recent months that identified lymphatic issues in the unaffected arm; I cannot recall the details, but the authors said that the study suggests LE may well be a systemic condition.   I was actually thinking about that today, contemplating a swollen ankle from an injury that happened more than three weeks ago. It seems to me that the swelling should be about gone by now--no pain whatsoever now, just lingering, and very visible swelling. This is on my LE side, but certainly not in the same quadrant.  Could I be seeing evidence of a sluggish lymphatic system?

I won't be home for a few days, but when I have time I'll try to find that study and post a link to the abstract.

Carol

purple32

Dont scare me carol!

My knee ( old injury) is killing me.  I cant even do the Sansone walk.  Its been 4 days - no injury.  IF it is swollen , its mild enough where I cant even see it, but I wondered too if there was " something " going on.

I was all set to put my elastic FUTURO brace on this morning and  walk with Sansone,  but  I woke this AM with the leg hurting even more, which I find quite odd since I have essentially done " nothing".

A little worrisome.

Cindyl

Memoi camis cancled by store.  Out of stock.

KS1

On Friday, the Memoi short sleeve camis arrived from www.legluxe.com.  My overall rating is positive, and I would recommend it to those who need more  upper arm/axilla coverage than provided by no-sleeve options.

 For those who want more details, here goes ...

 I ordered small, medium and large sizes because I want options I can wear with and without swell spots.  I am petite (5'3", 105 lbs with small bust and ribcage), and the small fits me well, but like most shapewear, it's a pain to get in (definitely need to step into it, not pull it over the head).  If you are on the borderline for sizes or don't need/want firm compression, I would definitely size up.

I've worn the Memoi short sleeve cami small without swell spots for two days, and so far I like it a lot better than other axillary/side/back options  I have found,  factoring in controlling swelling, comfort and ability to wear normal clothing.  (Lately, I have been wearing a huge jovipak axillary pad under two compression athletic shirts: it  controls the swelling reasonably well,  but it's hot and I look like a football player and can't wear most of my clothes.).   I haven't yet tried the medium or large with swell spots or jovipak ax-pad. 

The Memoi short sleeve cami is made of typical shapewear material, and I'd say it is a bit more firmer compression than sleeveless control it brand shapewear.   It is considerably more compression than the various brands of compression atheletic shirts I have found and it's not as uncomfortable as the Design Veronique short sleeve bolero. It's longer than the DV bolero,.  It is similar in length to control it camisole, but doesn't seem to roll up as much.

On me, the shirt sleeves are looser and shorter than the design veronique bolero (they overlap with the silicon band of my arm sleeve instead of going half way to the elbow).  The body of the garment is seamless, but there is a seam where the arm joins the body of the garment and under part of the breast, so  I have worn the garment inside out.  The camisole doesn't flatten my bust, and gives a bit of support, but like I said, I am small busted.  It's scoop neckline shows less under clothes than a compression athletic shirt or the design veronique bolero, but still shows more than a bra would.  

-KS1