I'm so confused | Sleeve or no sleeve | early LE

Lago, I strongly second spunkygirl's recommendation--you have visible swelling and the inside tendons are not able to be seen on the swollen wrist--you need lymphedema therapy

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

Your onc completely misunderstood the Katie Schmitz presentation about strength training protecting against lymphedema--she has also studied women with lymphedema, and they could ONLY do strength training when they were completely stable--no need to see a LE therapist for 4 months or more--and had custom garmets to wear while weight lifting--and still some women flared.

Weight lifting DOES NOT CURE OR TREAT LYMPHEDEMA--strengthening--when done by the PAL protocol can fairly safely strenghten arms and prevent some lymphedema and if women have lymphedema, they tend to flare less with a strengthened arm.

Your onc's response is exactly what we were afraid of when the "Weight lifting slashes lymphedema risk" headlines came out.

You have lyphedema--and I'm really sorry--but the good news is that you caught it early and and can get early treatment, and get it under control.

If your compression sleeve and gauntlet are well fitted, you can consider wearing in while waiting, --the best bet is to get a referral to a qualified lymphedema therapist.

There was a study where they put women in sleeves with early LE--but only under careful supervision, and it helped.

Here are hints on what to do while waiting: There are links in the web page

http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#while%20waiting

What to do While Waiting for Your First Appointment with a Qualified Lymphedema Therapist

DO NOT try and treat this yourself!!! Proper professional treatment is essential to getting control of lymphedema and preventing its progression. Treatment can be expensive and inconvenient, but this condition is life long, potentially disfiguring, disabling and possibly life-threatening (if you get an infection known as cellulitis) so professional evaluation and treatment as soon as possible is essential.

1) Get evaluated promptly by your doctor to rule out other causes for the swelling in your hand/arm, and get a referral to see a well-trained lymphedema therapist;

2) Drink plenty of fluids -- staying well hydrated helps dilute lymph fluid and keep it moving freely;

3) Elevate the swollen arm or hand as much as possible during the day and on pillows at night; support the arm well so that it doesn't tire;
4) Several times a day pause and do some deep breathing -- this helps stimulate the largest lymph vessels in your body;

5) Raise hands over head as high as is comfortable for you, three times a day, and pump fists 20 times;
6) Call for medical help immediately if you have severe pain, redness, fever or feel ill;

7) You can try mild compression gloves by either Sammons Preston or Isotoner® Fingerless Therapeutic Gloves if your hands and/or fingers are swollen until your appointment with your lymphedema therapist. Be sure to bring them along to your appointment;

8) Do NOT use ACE wraps or any other wraps without the advice of your lymphedema therapist after your evaluation and your treatment plan is scheduled.

Call your onc back and get a referral, and let us know how you do.

Sorry if this comes off as a rant, but the last study she published iin 2009 was SO misunderstood that she helpfully wrote clarifications on the NLN site:

http://www.lymphnet.org/lymphedemaFAQs/weightliftingLE.htm

Perhaps you'd like to share them with your oncologist.

Kira

Lago, I was editing away, I think the bs surgeon is the better bet--sorry to get so rant like about this, but it really upset me that an oncologist would hear the presentation and think that weight lifting cures lymphedema.

Again, I'm so, so sorry this happened, but you will get it under control quickly and you're so on top of all of this.

Kira 

Lago, if it helps you, I recently got fitted for a sleeve despite not having active symptoms.  It's a sad day when the PT trained in lymphedema tells me she really doesn't have evidence to show what the correct protocol is.  Honestly, your photos look like two normal arms to me, but I am deferring to the glorious Kira, who taught me most of what I know about this!!

The reason she thinks the sleeve could make it worse is that some evidence seems to be out there that wearing a sleeve can precipitate LE.  Can you see why as a patient with no active symptoms I'm like, What the Heck am I Supposed To Do???

There aren't clean answers, but I think the consensus on this board of real experts who live with this problem is that a well-fitted sleeve will help, not hinder you.

I just wrote my PT and asked what the recommendations were for wearing the sleeve in flight.  She told me there aren't any!!!!  Just to put it on before flight, and take it off when I get to the hotel.

Iago, I am so sorry you're dealing with stupid LE.  But, it looks like you caught it really early and you are so smart to be asking questions!!!!  I will second what everyone else has said...you need a qualified LE therapist.  I love my onco.  He's fantastic, but he knows JACK about LE.  And apparently, this is very common.  But, I'm fortunate because he and his (most of them anyway) staff know this and bow to the LE therapist in my area.  She's Vodder trained and extremely good at her job, but even she doesn't know as much as Binney and Kira. 

So, I would get your doc. to get you in with a good LE therapist and let her help you.

 Again, I'm really sorry you're dealing with this.

It sounds like everyone is giving good advice. I wear a sleeve even though I have slight LE. I think you should go to a physical therapist who specializes in LE. They will give the best advice on what to do for your arm.

Lago, you asked if this could be reversed: yes--with proper treatment. Of course moving will help things drain, as the muscle pumps the lymph, but there's no substitute for proper treatment with a LE therapist.

Kira

Lago, here's my thought on it.  Yes, your onc is possibly right.  But, another opinion from an LE specialist would certainly be more useful information.  The bonus on getting a sleeve is, if for some reason it does start up again, you have the freedom to wear a sleeve or not.  It's just more tools in the arsenal, is the way I look at it.  I plan to wear mine during long air travel.  The last thing I need to be worrying about when I am overseas is my dumb arm.  My PT also said that if I have troubles while I'm away, having a sleeve will allow me to begin treatment before I can get back to her and get an eval.

Good luck to you!  Sounds like you are doing all the right things!  By the way, my LE massage therapist told me to get right to the gym, and do low weights high reps.  General advice from him was use it use it use it!

This time of year they sell large slabs of chocolate about the right size you can start with, but don't do too many reps as things could overheat and get sticky. And you don't want extra washing to do, if it gets on the sleeve...  Why would anyone use tins of BEANS????

Letlet, That study with the sleeves was very encouraging, and they are doing a similar study at Mass General right now.

My husband can never "see" my swelling either--we know our bodies, and when I see the the pictures, I immediately notice the loss of wrist tendons on the swollen side.

LE stinks, rots, sucks--but taking that first, really hard step and going for therapy is crucial--you'll get the tools you need to get control and it's an adjustment and a learning curve, but please let us know how we can help.

I have the study somewhere on my computer: I rename them, and then have to search for them, but I'll look for the abstract.

Letlet, it's not denial, it's just a slow realization--you're doing the right, brave thing, and dealing with this--and you will get it under control.

Hugs and let us know how you make out with the therapist.

Kira

I sure hope you are wearing your sleeve and gauntlet when you lift weights.  You might be able to get away with not doing so for a while but it will catch up with you.  I have minor LE and don't wear the sleeve and glove (its primarily in my hand) except when i exercise or fly or sometimes in the summer when I'm out in the heat.  When you wear the garments while exercising the exercise can act as a pump clearing up the swelling for some of us.  My symptoms are much better now that i do this, I have no real detectable swelling.  But lifting without the sleeve will eventually make things worse.  I did this for a while because my swelling came and went and on the day I saw my surgeon I had no swelling and he didn't think I had LE.  A few months later it was clear.

 I have a fabulous oncologist whom I think the world of and an amazing surgeon and I would rely on neither of them for advice about LE.  Really, only an LE therapist knows what to do. 

Lago, it's a law of nature that this happens when no one can be reached, don't worry about the delay, it's minimal--although incredibly frustrating.

Here's a link to what to do while waiting--as far as the sleeve/gauntlet go--some have many sizes and don't tolerate much variabiity, while others--like Jobst, are just small/medium/large and fit a large variety of arms within a size--what brand/size is your sleeve--you can look up the sizing on-line.

Go to an on-line store like LymphademaProducts and check the sizing.

http://www.lymphedemaproducts.com/

http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#while%20waiting

(There are links in the original web page)

What to do While Waiting for Your First Appointment with a Qualified Lymphedema Therapist

DO NOT try and treat this yourself!!! Proper professional treatment is essential to getting control of lymphedema and preventing its progression. Treatment can be expensive and inconvenient, but this condition is life long, potentially disfiguring, disabling and possibly life-threatening (if you get an infection known as cellulitis) so professional evaluation and treatment as soon as possible is essential.

1) Get evaluated promptly by your doctor to rule out other causes for the swelling in your hand/arm, and get a referral to see a well-trained lymphedema therapist;

2) Drink plenty of fluids -- staying well hydrated helps dilute lymph fluid and keep it moving freely;

3) Elevate the swollen arm or hand as much as possible during the day and on pillows at night; support the arm well so that it doesn't tire;

4) Several times a day pause and do some deep breathing -- this helps stimulate the largest lymph vessels in your body;

5) Raise hands over head as high as is comfortable for you, three times a day, and pump fists 20 times;
6) Call for medical help immediately if you have severe pain, redness, fever or feel ill;

7) You can try mild compression gloves by either Sammons Preston or Isotoner® Fingerless Therapeutic Gloves if your hands and/or fingers are swollen until your appointment with your lymphedema therapist. Be sure to bring them along to your appointment;

8) Do NOT use ACE wraps or any other wraps without the advice of your lymphedema therapist after your evaluation and your treatment plan is scheduled.

Let us know how you make out with the rehab MD

Kira

Feldman is in Chicago--I believe he will evaluate you, and then refer you to a therapist.

Kira

lago

Your diagnosis seems very similar to mine.  I also had similar swelling issues.  Not the horrible ballooning or "elaphantitis" you hear about but noticeable.  I did see a certified lymphedema therapist and was fitted with a sleeve and given more exercises to do (I had been doing other ones since my mastectomy/axillary lymph node removal).  In seeing her early she got a baseline of data in case the lymphedema ever gets worse, I got reassurance on what I need to do, and I am learning what my body's triggers are that make the lymphedema worse.  I've figured out that being in the car for long trips is definitely a time I need to wear the sleeve.  Hope all goes well with your evaluation.

Ha!  Binney, if you saw my first scarf, you would beg me NOT to send you one.  But, I am getting better, so don't be afraid. 

 Guitar playing is not coming along at all, I'm afraid.  My right arm/side is my affected side, and I have not been able to figure out a way to play without pain.  So, as a consequence, I just don't play.  I need to try and figure out a way to make it work.