is it guaranteed to get worse?

Djs: I would not expect that it is inevitable that it will get worse with tiime--actually, with good care,  I think the odds are that it will improve.

There is a study by Andrea Chevillle that says the greatest risk for developing more severe LE is mild LE, but it doesn't seem to factor in treatment.

In my experience, working in a rad onc office, people seem to flare up and after they gain control, they tend to improve. Some people improve to the point of hardly needing compression, and others of us, need more. Our lymphatic systems are all different, and the impact of radiation can occur over a couple of years after rads.

So, don't expect it to get gradually worse, you are on top of it, and will always have some impairment of the lympatic system, but there are a whole lot of women on these boards--many of whom have drifted away, as would only make sense--who got things under control.

There was a woman who posted whose LE therapist told her that her worsening LE was her "new normal" and no one here agreed with that--that's the sign of a LE therapist who hasn't figured out what works for this patient.

I did talk to the head of a LE training school, and his advice to me, was to keep up the MLD and encourage "collateral" lymphatics to form. The lymphatic system is fragile, but  healing can occur.

Kira

djls, when I read your post, I could feel your distress, and my heart goes out to you!  I'm about where you are--no wrapping, and I need to wear sleeve and gauntlet only when doing activities that I'd expect to stress the arm.

I don't have years at this, just about six months, in fact, but I do feel like all the care I've learned to do is truly helping me to put LE in its place. One thing I have done that I know has helped me enormously is to use weight training to develop some strength in my arm.

I'm following a program developed after research called the PAL Trial (physical activity and lymphedema), and it's important to be very cautious when lifting weights. The PAL guidelines are based on precautions that were developed just for us.  

Before I started my lifting program, my LE arm would tingle and ache and sometimes swell after almost any physical activity, and now, (knock wood) I don't have that problem.  I believe it's because my stronger arm no longer signals 'stress' to my lymphatic system when I lift boxes, etc.  I wrote a long description of the PAL program in the thread called 'just call me paranoid' and you'll find it early in those posts.  

You might take a look and think about working with a trainer to help you follow the PAL Protocol.  It's a way to do something proactive to help keep the LE beast at bay.  No guarantees, of course, but it has worked for me.  I still need to take care to do MLD every day, and I have issues when I fly and when it's hot, but more so with my truncal LE.

I know for sure that I am still at risk for the LE to worsen, but I no longer feel that 'worse' is inevitable. Most of all, I feel like being proactive with the weight training has given me at least one way to DO something about the frustration and anger that comes with an LE diagnosis.

Best wishes...

Carol 

Hi Djls,

I had to respond because we are the same age, got dx'ed the same month and I have roughly the same measurements (I don't wrap either). I struggle with frustration about how little is known about the lymphatic system ( and how little motivation ($$) there is to study it). I also get pretty irritated with the DME folks who view us as cash cows-I've already been "milked" quite a few times since January. However, that said, I have been training for an outrigger canoe world championship since my DX, and last week had a qualifying time to make the team.  I wear the garments all the time...a class I when not working out and a class II when training, and sometimes they are a problem (even though I have tried different fitters to verify fit, they can trap fluid and my LE moves around). Generally though, LE hasn't stopped me from being as active as I want to be, and I think the key is to find someone (PT) who will return you to YOUR ideal level of functioning. As my PT says, we don't just have to be thankful to be alive, that's not good enough. For me, I feel sooo much better when I get my arm moving, but for you there might be some other key to keeping things in check...either way I don't believe for a second we are destined to be wrecked by this beast or have it living in our forebrain forever.  

Cooka, wow, congratulations!! What an inspiration! You are so right, we don't just have to be thankful to be alive, we have to LIVE too.



Djls, I am like carol, have only been at this for a short time compared to many here. But, I am hopeful that with all the information, tools and controlled exercise, I can keep my early stage LE from ever progressing.



Best to you, Catherine

A full gallon of milk weighs 8 lb. (Per Katie Schmitz, the woman who published the LE weight lifting studies.)

The more conditioned you are, the more you can utilize the muscle pump to pump lymphatic fluid and are less likely to flare with using the arm.

The key is slow and steady.

The things you love should be in your life, IMO

Kiraa

Hi, dj:

I am now in my second year with LE and it's actually better than it was in the beginning.  I'm not sure if it's because I manage it better, or what, but life is pretty easy these days. 

The learning curve, not to mention the emotional trauma that comes with an LE diagnosis just takes time.  Be patient and gentle with yourself...having bc and then LE just sucks, honestly, and it takes us time to process it all.

I play guitar, garden, and basically do all the stuff I want to do.  Yes, I have to do some things differently now, but it's no biggie...I'm sure you will find that the longer you deal with it, and the more you learn HOW to deal with it, the easier it will get. 

Hang in there, my friend...

Suzanne

Carol, I have been told by my surgeon, rad doc and PT that I must not lift more than 5 lbs, ever. Since I have. problem on both sides this makes it very difficult to do pretty much anything at all.

Suzy, thanks so much for your post and to all the other helpful and knowledgable ladies here. I have already noticed that I feel better if I exercise, so it makes sense that training the arm, gently, would also help in the long run.

When you do the gardening etc, do you wear a sleeve? For now I wear a sleeve except when I sleep.

When people talk of MLD, is that just the massage on the neck or do you also try to massage the affected limb? 

Momine, I can get you some studies that show why lifting weights can be beneficial to those of us with LE.  If you would like to have some resources to share with your team, PM me and I'll get you supplied.

Carol 

Momine, have you seen the National Lymphedema Network position paper on exercise?

http://www.lymphnet.org/pdfDocs/nlnexercise.pdf

Good place to start the discussion with your treatment team--they do have some comments in there, like push ups are okay, but overall, it supports gradual exercise for people with lymphedema.

Kira 

Hi, Binney:

I know!!!!  I hate that the kinesio tape adhesive causes me such problems - the stuff really works for me, but the adhesive causes open sores, even with a barrier.  So I finally had to give it up.

Hope you're doing well - you're so right - it's onward and upward no matter how uphill it is at times. 

About getting worse - I did not have LE in my hand until I flew with only a gauntlet on, moving the expanding fluids into my upper hand and fingers.  Goodbye gauntlets, hello gloves.  I'm managing to be stable, but when I fly next I think I'll wrap both hands very carefully, and wrap my LE arm.  I do not want this to continue to progress.  Go wrapping.

Thanks for the insight that it does get better.  LT isn't going to be happy there's a more increased amount of swelling. 

Here's a thought - does it seem to be more of a problem with skin-sparing mx?  What I mean is, all that extra floppy skin on the bc side is where it's the worse than compared to the arm.  Of course, I could merely be over-thinking things too. 

Thanks, Momine.  BS and NP didn't think it was fluid filled which of course is good.  LT doesn't like that it's larger than it had been.  Today she showed me how to wrap the chest for when exercising with tape that only stretches one way, instead of wearing the binder which stretches multiple directions.  Said am only to wear that when exercising and not to do it for long periods of time, that it can flatten the breast tissue.

I'm also sporting kinesio tape to hold open the skin flaps to air out.  Even though I dry them fully, they get pink spots in the folds from sweating, etc.

LT put on Geligne post surgical breast form by Silipos to help with the scar on one breast.  Any one have experience with this product?  She'd just gotten it in, so I'm using it and will be giving her feedback.