Time Period for developing lymphedema?

Patti3

Hi everyone! Just thought I would write and say that Im a ten year triple negative survivor..ive had 33 (way to many) nodes removed and have never had LE. Ive been very active physically and I  weightlift. Ive also flown to Ireland (nervously i might add) without any garmet, i did however try to keep moving my arm around every half hour or so. Im careful about bug bites and treat cuts and scrapes immediately with an antiviotic ointment. I do not have my bp taken but have under an emergency situation had blood drawn from that arm (against my wishes). I remember my surgeon really making me nervous about everyday living after my surgery, he said..dont vacuum, dont clean windows, dont do any repetative motions, dont get a sunburn, dont shave with a razor, dont take hot showers, dont sleep on that arm-sleep with your arm above your head! i thought I would loose my mind remebering everything I needed to do! Im not saying that what i do is right..but it has worked for me so far. Ive seen other women experience LE and my heart goes out to them.

Wishing you all the best in 2012!

hugs,

patti 

Binney4

Patti, 10 years triple neg is wonderful! I hope you've been over on the TN forums posting encouragement there -- lots of women there are looking for a story like yours! And believe me, all of us here are truly happy you're also LE-free.

There's a certain danger in posting on a thread where women are sharing their struggles and grief when you yourself are (so far, at least) exempt from the problems they're facing. Sadly, a message like yours can be construed to mean you've done something "right" that the rest of us somehow bolluxed up. I know you didn't mean that, but if you think about it perhaps you'll see what I'm saying.

The women on this board are very careful of the feelings of others because we need this space to be safe and welcoming, so I'm hoping none of us will erupt over the unintended implications. But I do need to tell you that we're not looking for sympathy from any of our bc Sistahs.

Instead, what we hope for you is that you'll stop taking chances with a condition as serious and life-changing as this and start taking much better care of yourself than you have til now. LE can develop at any time, and those few life-style adjustments you mentioned above are simple enough and clear enough that they're easy to follow. After all, ten years later you're still able to recite them pretty accurately.

Here are a couple of websites where you can find up-dated LE risk reduction guidance:

www.lymphnet.org  (See their Position Papers)

www.StepUp-SpeakOut.org

Be well!
Binney

Heidihill

4 years after my ALND I don't feel I am out of the woods in terms of lymphedema risk. I try to exercise my arms everyday, including lifting weights. But my arms will get warm, itchy and red on long-haul flights, carrying heavy back packs on treks, using wallking poles for over an hour, getting cut badly, biking on rough terrain. Fortunately, I am able to massage my arm back into shape. Also raising them and moving them often on long haul flights (over 12 hours) help. I'm not as fortunate as Patti but stll pretty lucky. I still always have to be aware of how my arm is feeling and get any load off of it and raise my arm for a while when it doesn't feel right. And that even with well-trained arms.

kira66715

Patti, it's kind of analagous to the women on the stage IV board asking women who are not stage IV to stop posting asking for reassurance.

None of us want to have LE, and to the degree that we were informed, we took the best care of ourselves that we could.

Many of our bc sisters treat us like pariahs.

You are correct in that we've learned that we can be active and exercise.

I could never put it better than Binney has, but we KNOW that many women with lots of nodes out didn't develop LE, and some of us with just one or none out did. And it sucks for us.

This is our safe place to share and support. We don't begrudge you your health and lack of LE, but as Binney said, the message kind of implies that we messed things up or we're just unfortunate souls--and pity is the last thing we want.

As Heidi wrote, LE can show up decades after axillary surgery, so I hope by reading these boards you've learned what you can do to minimize that from happening.

Kira 

LtotheK

Just thought I'd report in on what my PT said when I asked about 15/20 mm gloves/sleeves.  She felt they are not, as she put it, "medical grade" compression and does very little.  She wants me to stay in the 20/30 mm.  I read online these are also for "at risk" and those with limited LE.

As they say, we really all just do the best we can.  I think this is sort of case closed for me right now, I'm getting on a plane Saturday, and it's not like I can get different gloves.  I do fly a whole lot, and it has been fine so far with the 20/30.  But when they are new, they are so tight, and I get really paranoid.

I think Patti's heart is in the right place, she wants to let people know we don't all get LE, and for someone at such high risk as she is, it is inspiring.  But yes, these posts can rub the wrong way, it is so difficult in writing.  Especially with all of us who have so much at stake (LE is my big trigger issue, as I would pretty much have to give up my career should I develop it).

kira66715

L to the K, the 20-30 mm sleeve is the "accepted" compression, and different fabrics are softer--I think you have a jobst sleeve, and that's pretty soft. 

LE sure impacted my professional life, and personal life, and I know of some women who have had to give up their careers or curtail them due to LE.

It's not just swelling.

Kira 

Patti3

im so glad that ltothek understood..I in no way meant to do anything other than to share that it is a very scarey possiblility for us all, including me..but that it doesnt happen to everyone. Im sorry if I have offended anyone, I will be more careful of what and where I post next time. In no way was I implying that you did anything to bring on LE..and truly my heart goes out to you!

Sorry, 

patti

LtotheK

Patti, I have been misunderstood on the boards, too--please don't worry!  Writing just doesn't convey the emotion we intend.  And I do find overall the people here aren't just nice, they are amazing, so I give the benefit of the doubt always.  Have a great weekend!

LuvLulu07

Good Evening All -

I appreciate the recent posts - this is a wonderful board and the LE threads offer so much support.  It's important for me to remember sensitivities and others' struggles, too.  As I've started to navigate BC world, post-surgery, I'm amazed at how little information about LE is out there, especially from surgeons.    

Kira   I've seen a recent post about class one gauntlets/gloves - what are these?  I am traveling again, long flight, and am prepared with a Juzo sleeve and a choice of a Jobst or an Isotoner gauntlet.  I'll take both gauntlets, but I'm not sure of the difference between the two.

Thanks ~ Joy

kira66715

Joy, Isotoner makes "therapy" gloves that give light compression--not sure the amount, and they have fingers.

A standard gauntlet just covers the hand and thumb and goes to the knuckles/MCP joints. Some companies call their gloves: gauntlets with finger stubs.

Now, compression class--there are two standards, American and European and I can not get the companies who use both to tell me if I should go by compression class or mm Hg of compression.  Here's info on them:

http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm#Millimeters_of_mercury_and_compression_class"

Millimeters of mercury" and "compression class"

Unfortunately, size is not the only consideration in fitting a lymphedema garment. The amount of compression your garment applies will vary according to your specific needs and the stage of your lymphedema. This compression level is measured in units called "millimeters of mercury." It's written in scientific shorthand like this: mm/Hg. (The "mm" stands for millimeters, and the "Hg" is the chemical symbol for mercury.) Compression garments are ordered by "compression class," or the range of compression you need, stated in millimeters of mercury.

Here's a run-down of compression classes recognized in the United States, along with their usual uses (which may vary with individual circumstances):

Class 0: 15-20 mm/Hg - used for those at risk for lymphedema

Class I: 20-30 mm/Hg - used for those at risk, or for early or mild lymphedema

Class II: 30-40 mm/Hg - used for moderate or severe lymphedema

Class III: 40-50 mm/Hg - used for severe or hard-to-control lymphedema

To add to the confusion, European compression classes differ slightly from their US counterparts, like so:

Class I: 18-21 mm/Hg

Class II: 23-32 mm/Hg

Class III: 34-46 mm/Hg

There is a Class IV as well, with higher numbers of millimeters of mercury, but they are rarely used for arm lymphedema.

The fabric used in your garment may be soft (like Juzo's "Varian Soft") or sturdy (like Jobst's "Elvarex"), or somewhere in between. It may feel flexible or stiff, smooth or rough. All these factors add to your sense of the fit of your garment, and to its effectiveness for you as well. An experienced fitter takes fabric choice into consideration in order to provide you with the garment best suited to your specific needs. A compression sensitive person may need a softer fabric to prevent her fingertips from turning an unhealthy shade of purple, while a person who tends to develop fibrosis easily may do better with a firm and sturdy fabric -even if they both require the same compression level-

Clear as mud, right?

Kira

kawee

Hi, girls.  My name is Karen.  I am a survivor of almost 3 years.  My concern is this:  My left arm has always been a little stiff and raising it over my head difficult.  A week ago I notice fluid along side my breast, under my arm and now in the palm of my hand.  Also, it feels as if I have a cord-like thing  in the fold of my elbow.  I have an appt. with my breast surgeon Tuesday.  I'm guessing  it's lymphedema.  Don't know why this would come on all of a sudden.  I had a biopsy of a red spot on the back of my elbow??  I was reaching for something a couple of weeks ago and really, really had to stretch my arm and it hurt, but did it anyway??  Can things like that trigger it?  Any ideas.

Thanks,  Karen 

kira66715

Karen, it sounds like you might have some cording--that's the thing in your elbow

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

If you had the biopsy on that arm, and maybe pulled a muscle on the same arm, it could trigger swelling. What you're describing is swelling in the breast/arm and palm--not a typical pattern, but LE can be "patchy"

Although some physicians are familiar with LE, the best bet is to get a referral to a qualified LE therapist:

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

There is a section on the website about what to do while waiting for the appointment with a LE therapist:

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.

Unfortunately, the lymphatic system can be impaired for a while and an "insult" to it can trigger LE. But until you're evaluated, it's not clear what's going on.

If you have any pain or increased swelling, please call a doctor immediately. 

And let us know how you're doing, okay?

Kira

LuvLulu07

Kira   Thanks for the compression garment info.   It looks like I have a Class 1 Juzo sleeve, and a Class 1 Jobst gauntlet.  The Isotoner glove is actually a therapeutic gauntlet, without fingers.  The Isotoner has much less compression than the Jobst gauntlet, a good option when I'm traveling, I guess, if the Jobst seems to be too much.  I will bring all of these to the lymphedema appt. here, whenever that is scheduled.  Thanks, Kira, for generously sharing your knowledge!

kira66715

Joy, I was looking at our link for "fingerless" isotoner gloves, and they clearly had fingers, just not tips:

http://www.totes-isotoner.com/product/id/101751.do?CAWELAID=590785858

Always wise to bring all your gear to an appointment. 

Kira--glad to be of help

OneBadBoob

Kira they also have full fingered gloves totally covering the finger tips.



http://www.totes-isotoner.com/product/full+finger+therapeutic+gloves.do?green=B99812D0-5DB7-5415-0E7A-8611D98AF7E4



I really like these for daytime during "23/7" finger wrapping as I am doing now.



No getting the "gauze" wrapping stuck on things and it keeps the wrapping clean and in place.

kira66715

Thank you Jane--I'll make the link live--http://www.totes-isotoner.com/product/full+finger+therapeutic+gloves.do?green=B99812D0-5DB7-5415-0E7A-8611D98AF7E4

Jane, any idea of the compression of the isotoner gloves? 

Kira

OneBadBoob

Thanks Kira--cannot figure out how to make links live or insert pictures with iPad.



They have a customer service number which I will call on Monday and see what the have to say about compression.

LuvLulu07

kira  Yes, you're right about the Isotoner gloves - with fingers, but without finger tips.  It was strange getting the Jobst gauntlet, and realizing that it didn't have the individual fingers.  

Yesterday I shopped with DH at a big warehouse type store, and when packing the cart with our items to leave, realized that I was about to scrape my fingers, or worse.  So I put on my winter leather gloves, which really helped.  I don't relish the thought of using leather gloves when I shop, especially in summer.  Is there anything better out there to use?  Maybe the Isotoner gloves with full fingers?  

Southamptonmom

Okay. I've had another flareup of my right hand and thumb. Should I be wrapping it all day long, and for how many days before I can figure out if it is gone? I have my first appointment tomorrow to find out about a glove and sleeve.

LuvLulu07

southhamptonmom   Sorry to hear of the flare - it's frustrating, isn't it?   I know that somebody will chime in to give you some good information, I'm still a newbie at LE and have a lot to learn yet.  Have you tried the Norton or Lebed exercises? 

Southamptonmom

I know I saw it somewhere, but now I can't find it.

LuvLulu07

southhamptonmom

Lebed exercises are on youtube - there are several, and they show simple stretches that should be done in a series.  I really like them, but I've not yet found a complete sequence of Lebed on youtube, it 's a little awkward to try to piece them together.

Norton exercises were described by Kira in a post several months ago, on one of the LE threads.  If you search "Norton exercises" they will come up.  I really like these - they are simple, effective and make me feel good afterwards.   It sounds like you're pretty active - the LE exercises can seem minimal, almost like they're not doing much.  What I'm learning is that these exercises encourage and promote healthy lymphatic flow - it's not per se a muscle stretching or strengthening kind of a routine.  Hope this makes sense? 

What I don't know is if these exercises are appropriate during a flare.  An LE specialist, or somebody more knowledgable can chime in on this one. 

kawee

Kira,

 Saw by BS today.  She says it is cording in my elbox fold.  Doesn't it extend from my armpit, because I don't feel it there?  Anyway, no more swelling in my palm.  Don't know what that was.  She says the fluid is nothing that can be aspirated.  She doesn't know if it's lymphedma or just swelling from that over stretching thing I did.  She going to have it evaluated and treated along with the cording.  Funny, both seemed to appear at the same time.  Also, I have pain with in my upper inside arm when I stretch it out.   Does the cording need to be treated (bet that's painful) because I read that cording, most of the time, is self limited and disappears within a few weeks?  I made an appt. for next week, but am not looking forward to it.

Thanks!

kira66715

Southhampton: is every thing better now? You sure don't want fluid hanging out in the fingers. Sorry your post got over-looked.

Kawee--that inner arm pain sure sounds like a cord. The treatment for cording is GENTLE manipulation and stretching. And most of cording will resolve on its own. Good thing to see a LE therapist though and get some relief and information.

I put a couple of Youtube videos up on cording and cording stretches--I have to find them.

Found them:

Check out these youtube videos

Breastcancersisters: AWS

http://www.youtube.com/watch?v=DhseruhnMUc

Breastcancersisters AWS stretches

http://www.youtube.com/watch?v=QoP9zQ05Qp0

Kira

Southamptonmom

The LE therapist wrapped my hand today, I'm going to keep it wrapped, giving myself a short break during the day, until it resolves. I guess I need a custom glove and ready made sleeve, and I'll need a night sleeve (Hope insurance covers it). What a pain in the neck. I hate wiping my ass with my left hand

kawee

Thanks, Kira, for the videos.  It will be interesting Monday to see what the PT has to say about the swelling alongside by breast and underarm.

After watching the videos I put my arm out and put my palm up, as they did in the video, and I saw the cord running from my underarm to the inside of my elbow.  It is small, but I am amazed I hadn't noticed this cording before.  I always pride myself on knowing what's going on with my body.  Oh, well, missed this one.  

Anyway, thanks again!

Southamptonmom

I was hoping to get som help. UGH.

1) The LE specialist is only wrapping my right hand. Is that okay? I don't have any swelling in my arm. I do have some swelling in my armpit. (17 nodes removed on right)

2) Within minutes of unwrapping my hand, my thumb is swelling up. Will it always be like this? 

3) I am wrapping my hand almost 24/7. I unwrap it in the morning for a half hour, then again at night before I shower. Otherwise, it's wrapped.

4) The cords are coming back in both arms! Why are they coming back???

5) The cords in my left arm (2 nodes removed), now extend into my left hand and down to my waist, and I wake up with the same stiff fingers that my right hand hand before the LE started. Am I going to have LE in the left hand too???

( I have had every side effect at every stage along the way. I feel like such a complainer, but non of this is my fault.

kira66715

Southhamptonmom: Even though my swelling is primarily in my hand, I am wrapped to the axilla--the fluid has to go up--if you just wrap the hand, where is the fluid going? To the forearm? Elbow?

The rapid re-filling after the wrap is removed, suggests that a blockage higher up is not being addressed.

Also, the swelling in the arm pit is not being addressed.

Cords are a risk for LE, but it doesn't mean that you'll get it in the left hand.

Of course none of this is your fault--what's concerning is the approach of the therapist--I really think you need to sit down with her/call her and ask her why she is just wrapping the hand, and just where does she think the fluid in the rest of the arm is going?

And that your cording is back.

I can imagine that this is terribly frustrating and scary.

You are NOT a complainer--this is scary stuff and the therapist approach is perplexing.

Kira 

Binney4

Southhampton, of course it's not your fault, and I'm so sorry anything has happened to make you feel that way. Before I started treatment I was afraid it was "all in my head," and needed the reassurance of my excellent therapist that not only was it real, but there was also good help for it that could make it better.  You're going to get on top of this and get everything back in control. Hang in there!

Gentle hugs,
Binney

LtotheK

Hi everyone,  I just wanted to mention a new routine I think is pretty lymphedema friendly, perhaps even helpful or preventative.  We'll see with time and more research.

I go into the pool and do 40 laps at moderate speed, which is supposed to be excellent for lymphedema.  Then, I dry off and do my weight routine very limbered and blood flowing.  1/2 hour of each a couple of times a week, sprinkled in with ellyptical, Pilates, stationary bike, and Rebounder. That is, when my back's not killing me.

I feel like breast cancer moved my body into the "over 50" set even though I'm 42.  But hey, I'm alive!