Does the swelling ever go away????

Nannajean, in my experience, it gets better, but everyone is different. If you are working hard at controlling your lymphedema (and I hope that Toyko flight was a while ago) and not making progress, then it's time for a re-evaluation with your lymphedema therapist.

And, if your lymphedema therapist isn't a great fit with you, time to look for another one.

This is frustrating stuff, so lack of progress is disheartening and upsetting.

 http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Even therapists re-certify, so they are checked in their skills, so we often need a re-evaluation.

I don't see that you're wrapping or using a night sleeve--and those are critical components of bringing down the swelling--compression sleeves just maintain. If you're not wrapping or have a custom garment that simulates wrapping, IMO, you should strongly consider it.

http://www.stepup-speakout.org/wrapping_bandaging_for_lymphedema.htm

Kira

Aw, Nannajean, I hear you! I'm so sorry you've joined our Sorority of Swell! It's a HUGE adjustment to come to grips with the "forever" part -- way too big a concept to deal with all at once. Grieving is hard work, and it takes time -- be gentle with yourself.

Nanna, have you tried doing the compression (wrapping or garments) all day, even when you're going out? It's rotten, but you need to know if that works for you or not, so you can make your self-treatment decisions more freely. We all make our own compromises with the self-care, but we can't really choose what we want to do about it unless we know for sure what works. If you've given it a fair trial and it isn't working, you definitely need to ask for more help from your therapist, or a second opinion from another one.

We all need to leave the cancer behind and move on. With lymphedema that comes from learning all the management tricks we can and staying on top of it, so we can take back control of our lives.You'll get there, Nannajean -- hang in there! Please tell us how we can help!

Okay, gotta add here that I laughed out loud about the elephant nose warmer. Now I know what to do with mine when I get new ones to replace them. I'll just call the zoo...!

Warm hugs,
Binney

Well I am new to this stuff still too.  I was DX last Sept.  I can  tell you that wrapping does help if you do it all day for two weeks and sleep in  your elephant nose warmer.  lol   I didn't believe it until the past two weeks.  I have been back in the  LE Clinic getting my arm back down.  I too take Femara.  I have wondered if that is causing some of the extra swelling that I am having all over. Oh joy if it isn't one thing it is another.   I have two more days of  the having to wrap  and I can say  my arm feels better and she was able to not use  one of the bandages yesterday and today.

Lindee, welcome to the group no one wants to join--the swell sisters. It sounds like you're on top of your lymphedema and well on your way to getting it under control.

I went to the NLN conference with Jane/OneBadBoob in September and she was so gorgeous in her LymphaDiva sleeves that people took pictures. She's so stylish and they really looked great.

Wearing compression in public is hard--it really is--but it gets easier. And every woman's need for compression varies---my LE therapist always says that you get things under control and then you see what you can get away with.

Welcome, and yeah, it is the gift that keeps giving. But I wish I could show you a picture of Jane in her Diva sleeves and gauntlets and how beautiful she looked/looks.

Kira

I didn't like wearing my sleeve at first but I finally became resolved to wearing it.  I actually enjoy wearing as it helps to desenstize (sp) the nerve pain in my arm (from lymph node disection).  I started LE mld and for awhile wearing it was painful right at the top of the sleeve.  Thankfully that is going away now & I am enjoying my sleeve again.  It took awhile to get this way, but I don't really care what it looks like or what other people think.  My comfort it most inportant thing for me.  NJ

Nannajean, sometimes in the middle of doing something else, while I'm away from the computer, it hits me that you asked about weight loss and LE, and nobody has answered that. So, hooray for me for remembering it this time while I'm sitting here -- another chemo-brain triumph!

Research shows that weight gain, especially weight gained since the bc surgery, is a risk factor for lymphedema development.

BUT! On the positive side, losing weight (even 5 or 10 pounds) benefits LE control, so as you lose weight you'll be working toward making this whole thing easier to manage.

Yes!

Well...then again, weight loss sure as heck isn't easy either!

Go for it anyhow!
Binney

Kira,

Thank you for the response.  My PT hasn't used the wrapping yet - since the swelling was mild and the sleeve and massage seemed to be getting under control - we decided to wait on the wrapping.  If I stop making progress with just the sleeve and massage - she suggested trying night sleeves and/or wrapping.  She also has me using some foam "chips" on the stubborn spot by my elbow at night.  Seems odd - but it has helped too. 

When I bought sleeves right after my surgery - I got one in a bright blue but never wore it and now it seems too tight.  I have been wearing the beige one I got at the same time and had worn several times when flying - it is more stretched out from wearing, I assume.  I am working at getting re-fitted though since it has been 2 1/2 years since I bought those.   I have seen other providers that have a variety of colors in the custom sleeves but beige is easier than trying to match sleeves and clothes!  

I don't burn easily but have gotton much better about protecting at least that side when in the sun - I have a oversized shirt that has that sun block fabric that I wear as a cover up.  Anything to be aware of when picking out sunblock if I am wearing the sleeve?  I wasn't sure if lotions etc were a problem with the sleeves.

Thanks

Tamara

Hi, I have had swelling shortly after node removal.  It stayed moderate until about a week ago when I was bitten by a spider on that arm.  Now it has literally doubled in size.  I was searching for treatment updates when I found this site.  I guess I was hoping that they had made improvements in treating lymphedema without full time wrapping.  Does anyone know of any new treatments in the works???

Thanks,  I've tried the wrapping a long time ago and it was just miserible.  I was really hoping that things had improved with technology.  I guess I will learn to wrap again. 

 o k....I've worn the sleeve and glove for a while, and find that I really can manage this pretty well on my own.  The sleeve makes my hand swell, so sometimes I wear the sleeve/glove combo for most of the day and just the glove when I get home from work, and bandage at night.  And if I am going somewhere for a few hours I have gone without anything and its been ok.  Nobody seems to ask too many questions when I do wear my garments, and a few people think its carpal tunnel. I guess its not too bad. I even went to the gym today for the first time since my diagnosis a year ago, wore my garments and didn't even care who saw me or what they thought. Maybe if I can lose this 10 lbs I've put on (thanks Tamoxifen....or maybe its just from getting my appetite back post chemo haha) maybe I can help decrease the lymphedema too.  One can only hope.

Sharon: 5 bandages total: I put gray foam on my hand and palm and I got into using a little 4 cm wrap when I was just told to wrap my hand and forearm, so first the 4 cm on the hand, then a 6 cm over that to the mid-forearm, then an 8 cm over that to the mid upper arm, and then two 10 cm wraps from wrist to axilla. Underneath it all, there's a roll of foam.

My LE therapist always tells me that I can skip the second 10 cm, and I was getting to that point, before I broke my hand.

So, it's stockinette, gray foam over it--held in place with artiflex, gauze finger wrap, rosidal soft foam on the arm, then the 5 short stretch bandages--and I can do in 10 minutes. My LE therapist is into layers rather than tension, and that's what I do--just enough tension to keep the wrinkles out.

Everyone is different, and I use a lot of short stretch--lots of people would just use a 6 cm, and 8 cm and then a 10 cm.

Kira