GRRRRRRRRR I HATE LE..........
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Kate, this is all very interesting reading. Thanks for posting it. I wonder if there has ever been a study that compares LE incidence for the various recon types. I do not recall seeing that. I think I might have seen one that suggested breast/truncal LE is higher after SNB because the most direct path from breast to larger lymphatic vessels is by definition being interrupted. It is a sad world when women seeking augmentation get better information about their LE risk than do women seeking reconstruction.
Carol
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Ain't that the truth Carol?!?!?!
Thanks for the info Kate.
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cooka I have a torn rotator cuff on my LE side. Somedays my shoulder hurts from the compression and I just give in and take it off. Today was a great day. I had them all on 12 hours. It was very hot here today too.
My surgeon released me today until I am ready to do the other hand. I do have some swelling but not bad. I will have to see if they want me in a glove now because it is in the middle finger from the joint down...also the one the surgery was done on. Again it is not bad but he said it may be causing the stiffness and pain in that joint...then there's the darn arimidex too.
I did some yard work today...felt good to be able to do something but man was I tired later. Fell asleep on the couch listening to my child palying across the street with a friend.
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KittyDog, falling asleep on the couch listening to your child playing across the street with a friend sounds soooo relaxing!
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Carol- Not sure there have ever been studies, either, but it would be a great idea. Dr. Marga Massey did have something about what kind of recon to choose if you already have LE. She said doing any kind of back flap could hinder being able to drain your arm through your posterior trunk. Since we're all at risk for LE it would seem the back flap would be a bad idea.
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Thanks Kitty Dog and Kira...I guess I will just keep taking compression breaks:)
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I need serious help with my Big Girl Panties. I just put on my brand new custom Elvarex (classic fabric) class 2 compression glove for the first time and I HATE HATE HATE it. It is heavy, stiff, and scratchy.
My hand and fingers are weak because of brachial plexus neuropathy. It took me almost 5 minutes just to get the damn glove on because the material is so stiff and inelastic and my fingers kept crumpling up when I tried to get them into the glove.
The problem isn't so much that it doesn't fit (only 2 discolored fingertips), but rather that I can barely move my hand or fingers because the material is so stiff. Can't pick up a pencil, can't type, can't hold a hairbrush, can't even hold a glass of water. In disgust, I took it off after 20 minutes and discoved that in the process of taking off the glove, I pulled off part of the cuticle of two fingers. So, now I have two bloody fingers to deal with. Also, my hand was puffier than when I put the glove on.
I've been wrapping my damn hand for over 4 months, and would love to graduate to a glove. My LE therapist says my hand now needs class 2 compression to contain the swelling. I understand this, but given a choice of a swollen hand that I can use and a less swollen hand that I can't move, I'll go with the more swollen hand. Given a choice of wrapping my hand 24/7 or wearing an elvarex class 2, I'll wrap. I see my LE therapist tomorrow and I am going to ask whether I can at least try an elvarex class 1.
If I knew then everything I know now about my cancer (oncotype RS of 10, surgeon was unable to get clean margins) and side effects of treatment (vascular insufficiency, brachial plexus neuropathy, LE, 6 surgical procedures to deal with non-healing wound), I would have skipped the surgery and radiation, and just done hormone treatment. I want my old life back.
It's a good thing I am working at home today, because I am fighting back tears as I type. KS1
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Awww, KS, you are so entitled to feel weepy over this! It just should not be this hard. I hope someone smarter than me comes along with some productive suggestions for how to deal with these challenges, but I do want to send you some virtual hugs. Don't you just feel like using those big-girl panties as a sling-shot to launch that odious glove right out the window?
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Oh KS1,
You've had to tolerate so much and sometimes the "logic" doesn't make sense--okay, your hand is swollen, so put a higher compression garment on it--yet you have venous insufficiency, brachial plexopathy and this is your good hand and you NEED the mobility. And quite often with hands, "less is more".
As I'm preparing to go back to the place where my treatment began, and I developed LE, and felt like my goals weren't their goals and give them a lecture on LE, I'm struck again by the attitude of the treatment team to eradicate the disease, but not really focus on the sequella of what they do. They are the heros, the ones who treat the life threatening invader, yet, as you noted, local control may not need to be absolute in order to control the disease.
And, they cured you, so what are you complaining about????
The fact that you're dealing with the after effects of the cure every day.
I HATED my elvarex glove. Just hated it. And I got it early on in the course of my LE. I prefer a softer glove, so the Juzo works well for me.
It's clear with you, all the thinking needs to be "outside the box"--because you don't fit into any neat boxes.
You are a class act and have handled this like a trouper and I find myself tearing up, that I want you to have your old life back, so much.
I always wish there was a place where all the various garments were available and we could try them on, like when we clothes shop. Somewhere there is a glove that will, possibly with various inserts or pads, work for you without ripping up your hands, trapping fluid and making your hand non functional.
Less is more. Softer is necessary. Function is key here. I'm wondering about the gloves that Jovipak created, by an OT, I'm thinking about Gottfried--low containment but soft, also Juzo class 1.
I know you have a great team, but lean on them to understand that function is key here.
Hugs and hopes for better days.
Kira
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Oh KS--how frustrating. This is all trial and error. Obviously the Jobst 2 won't work for you. I am like Kira and wish we had a set up with all of the samples of LE garments for us to look at. So far I have followed all the garment advice of my therapist and it has all worked but I can tell she is never sure if it will or not. She knows it is trial and error also. Each person is different. Keep at it. Becky
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KS- Your words touched me so much. I've only been dealing with my LE dx for weeks and I already yearn for my old life where the biggest challenge was dealing with recon issues. My heart goes out to all of you who have been battling this for months and years. And, like Kira said, to have to deal with the attitude of others who think you have nothing to complain about it because they decided to pulverize your cancer. I, too, wonder if my medical team used a bazooka to kill a mosquito and what my life would be like if they hadn't. I hope it helps (just a little) to know that others understand even if the rest of the world may not. (((hugs)))
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I found this on the MD Anderson Cancer Center site and was wondering if anyone has had this done or knows anything about it. I thought it was interesting that it said that patients who had have LE for a shorter time tended to have better results.
Lymphedema SurgeryLymphedema can often be managed with therapy and self-care. However, for many patients, surgery may help reduce the severity and symptoms of lymphedema. Surgical procedures involve bypassing the lymphatic system to drain off excess fluid and relieve swelling.At MD Anderson, surgeons perform a lymphaticovenular bypass, a variation of lymphovenous bypass. Two to five small incisions measuring an inch or less are made in the arm or leg using tiny microsurgical tools. The surgeons redirect the lymphatic fluid to small veins (venules) to allow for drainage, thus alleviating lymphedema. The procedure takes about 2-4 hours under general anesthesia. The hospital stay is less than 24 hours.Almost anyone suffering from lymphedema of the arm or leg is a candidate for bypass surgery. However, patients who have had the condition for a shorter time tend to have better results. Results will vary from patient to patient. Some will see a significant improvement in their lymphedma symptoms, while others may experience no improvement at all. A complete cure from lymphedema should not be expected.While the surgery may result in significant improvement of the lymphedema, continued therapy such as wearing of the compression garment, massage, skin care and exercise is recommended to obtain the best result. Lymphedema therapy should be resumed 4 weeks after the surgery.0 -
KS1, Sending my biggest hugz for the day to you. Glad we can vent here and people accept it. After all, no one else understands and that is why it is so nice to have this thread.
Someone mentioned the JOVI(box) glove. I have it with the matching sleeve. My MLD girl thinks the compression of the glove isn't much so maybe this would be good for you.(feels like class 1)
Gotta tell you, it is nice but I wonder if it is compressive enough. It feels a bit more than the Farrow glove which my MLD girl was not crazy about either. I can do anything in my JOVI glove but use my Medi 550 as it is a flat knit and of course the LE therapists love flat knit over circular. Looking at the JOVI, I can't tell if it is flat or not. The squares(material) are tiny like flat and the glove has seams but it feels like circular. If you have tiny hands the baby finger may swim in it, so get the size down. You can cut fingers to your lengeth size.
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Thank you all so very much. Your supportive words do help tremendously. Kira, you are right my rehab team is fantastic. My LE therapist is so kind, I feel guilty asking her to send back another glove (If the company remakes the glove in class 1 classic, it will be the third re-do as we tried a class 2 Jobst soft/seamless glove twice before concluding also fingers weren't designed right for me LE). Last week, she also ordered 2 Juzo helastic gloves (one opera length, one wrist length) from a different vendor. She wanted to do both in a class 2, but I convinced her that a class 2 opera length glove was not a good idea given my blood flow issues. So I will be able to get some sense of how my hand responds to class 1 vs class 2 in juzo.
The way I cope with stress and bad moods is by exercising. Before BC, I used to run 5Ks on Canadian crutches. BC took that from me, so I switched to speed walking. Since the hand flare in January, I've had to restrict this because it seems to make my hand swell. Oh crap, your cyber support was working but writing those last sentences is undoing it. Maybe I should just put on my new juzo soft sleeve on (which fits and feels great), wrap my hand and go sweat away the sadness. What's the worse that can happen - a bigger fatter hand? KS10 -
Ack KS1, I am so sorry:( The biggest meltdown I have had throughout this whole stinkin' BC ordeal is over the constant parade of gloves/sleeves that seem to hurt rather than help. Hope it gets better for you soon.
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KS, we sure do feel your pain. I sent you a PM.
Binney
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KS so sorry. I do not like the thick gaunlets either and it is already appearing I will need a custom one. I ordered the size three to use while my hand was swollen from the surgery. It's a wee bit too long...comes down on my pinky finger and a little bit to big around the wrist but it is keeping the swelling down and I am sure with the summer heat I will need it.
It's all too much trial and error. You will get through it! I also had to come down to a lower compression and so far no purple fingers.
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Stretched the hell out of the Jobst elvarex glove and put it back on. Managed to wear it for 45 minutes. Four fingers turned a horrible grey/puple color (didn't realize how bad until I took it off), 2 fingers went completely numb, and again my dorsum was bigger when I took it off than when I put it on. Initially my fingers looked ok, but then they became larger than they were before I put on the glove. I've decided -- this horrible misery-inducing piece of chainmail is being sent back.
I read some of the old BCO posts that mention compression sensitivity, and it kind of sounds like what I am experience. So, I am thinking about raising the question of compression sensitivity and lower compresson garment when I see my LE therapist tomorrow. I know some folks on the board have found that 'less is more." If you have, did you raise this with your LE therapist, or did your therapist raise the possibility? If you raised it, did you LE therapist take the possibility seriously of lower compression being better, or did they play the "LE doesn't hurt, SNB doesn't cause LE" denial game? - KS1
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Kate - I wanted to respond to your MD Anderson posting. I was at a Dr Marga meeting recently where she was discussing various recon procedures and ventured into lymphedema. She mentioned that there are a few different procedures being tried right now in an attempt to reduce or eliminate lymphedema. So far nobody can elminate LE, but some protocols may be hopeful in reducing. They are new protocols with only a couple years under their belts, so they cannot say waht the longterm result is one way or the other. She said in a "normal" arm, the highest pressure is in the arteries, followed by veins, followed by lymphatic vessels. In a LE arm that's a bit mixed up. The highest is artery, then lymphatic vessels, then veins. Based on this principle, the MD Anderson group is microsurgically attaching lympahtic vessels to veins in order to assist with drainage. She did not have an opinion on this procedure, since it is too new, but she did say they are all watching to see how these new ideas turn out. Her own work is related to microsurgically tranplanting lymph nodes/vessels from other locations into the axilla area. She is collecting data on it, and all her patients are considered research patients, but again, it's very new and she does not have longitutinal studies available. The "con" is that nobody knows the longterm on any of these. I hope that there are many more ideas coming, as we sure could use some breakthroughs!
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KS1--Just completed the STAR (tm) oncology rehab course--overpriced and underpowered, IMO, and glad a grant paid for it, but one of the things I learned is that when women/men with LE walk, their arms TEMPORARILY may swell--I know my hand does--but it resolves.
I vote for a soft juzo sleeve and skillful gauze wrap and sweat away the sadness.
Don't ever feel bad for sending back a million gloves until you find the one that works for you. A million and one or how ever many it takes.
Even my custom Juzo can trap fluid at the knuckles. No compression, especially for hands, is perfect.
Hope you're out walking
Kira
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kcshreve- Thanks for the info. I guess it's encouraging that they're trying new things. It at least acknowledges there's a lot of LE sufferers out there or they wouldn't bother I don't think. Funny, this is like the third time Dr. Marga's name has come up on 3 different threads in the past few days. I think she is highly respected so it's great she's in the LE corner. I'll keep my eye on the research. Thanks again.
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Kate, I had prophylactic BMX and prophylactic SNB. One month after exchange of TEs with gummy bear implants I developed LE. It was mild and mainly in my hand. It presented first with Axillary Web Syndrome and a Mondor cord coming from under the implant. I had extreme tightness and discomfort with the implants -- they felt like rocks strapped to my chest. I went to the Center for Restorative Breast Surgery in NOLA. I had my implants removed and autologous tissue reconstruction-- a DIEP ( Tummy re-purposed). It turned out that there was tons of constrictive scar tissue and inflammation around the implants. This is a pretty typical finding when implants are removed. During surgery they remove as much of the scar tissue as possible. I woke up from surgery with my LE virtually gone. After wrapping, etc 24/7 before surgery, I have not wrapped since. My one year surgery anniversary is next week. I have occasional mild puffiness in my thumb at times and that is all. My guess is that mechanical obstruction of lymph flow is a mechanism -- or partial mechanism-- some of the time -- for some women. Not the whole story, and not for all women.
BTW, at NOLA they do LE education with all women and their caretakers, wrap all women going into surgery, use legs for IVs and blood pressure cuffs whenever there is a question, and offer daily visits from the LE therapist during the hospital stay and post-op week.0 -
Jerusha- Thanks for sharing your story! It really gives me hope! I've never felt comfortable with my implants either. I had a revision where the PS swapped them for ones half the size and then did fat grafting. At first things felt great but the tightness has returned and just want to get rid of them all together at some point. The center in NOLA sounds amazing. This should be the standard of care for everyone.
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My LE PT is the one who suggested I may be compression sensitive and lowered the hand and arm compression. The fitter agreed with her that it was a possibility. Good luck with yours...send that glove back.
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KS1 I am a less is more gal.
A. Sorry this sucks so bad.
B. I totally remember the purple fingers. Freaky.
So here are my suggestions. I am guessing that you may have fit issues. If you can swing custom it has made a huge difference for me. No off the shelf sleeve fit.
I am not sure how high the compression goes, but I am a big fan of Barton-Carey custom glove.
(Dr. Francis has her doubts about them for what that's worth.)
The fit makes a regular glove look like a mitten to me. I sometimes wear an old Medi glove at night or for housework.
I wear juzo custom sleeves.
I am trying to figure out how to explain it but part of my issue, and maybe yours is very sensitive circulation (capilaries?). I tend to flush red a lot.
I tend to both respond to compression quickly but "bounce back" quickly.
I totally failed wrapping and juxta-fit wearing.
Honestly I wear my day garments most nights, sometimes I sub in the 15-21 silverwave bi-lat. Last hand option is wavy foam in a double layer of isotoner. (Not pretty but really effective actually) Kind of a winter only option tho.
On another subject are Brazil nuts good for LE? I thought I read that somewhere. Been eating them and the arm looks decent.
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And how screwed up is it that it is so easy to find an oncologist who knows just what to do, but LE is the great land of mystery and diy crafty care. Just sayin'.
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Kate 33, I love your slogan...you should make t-shirts! hugs terri in MI
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Kate 33, I love your slogan...you should make t-shirts! hugs terri in MI
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Terri- Wish I could take credit but I saw it on a t-shirt. You can find them at cafepress.com.
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Cookie, brazil nuts contain selenium, which promotes circulation. Higher levels can be toxic so see if you can get a recommendation from a dietitian about how many Brazil nuts to eat a day. If you're buying them in the shell it's helpful to know they crack out clean and whole if you freeze them first. (I learned that trick right here on the LE board at bc.org--thank you to whoever first brought that up!) A preliminary study of selenium supplementation in Germany in 2003 found it helpful in reducing swelling in radiation-related secondary lymphedema and in reducing incidence of a kind of LE-related infection called ericypelas, but suggested further studies were needed to validate that claim. I eat three or four a day. Can't say I've ever noticed any improvement in LE control, but I like 'em!
Fresh pineapple is another natural LE helper. It contains bromelein, which is an anti-inflammatory. Also yummy!
And of course there's chocolate, but there are no studies about that just yet. We're conducting our own study here on the board and so far there's unanimous agreement that chocolate (especially when used as a self-reward) goes a long way toward aiding compliance with such things as garment-wearing, exercise and self-MLD, as well as general well-being. As far as I'm concerned, our findings are conclusive and no further study is needed.
Be well!
Binney0
