GRRRRRRRRR I HATE LE..........
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Ok, milehighgirl I just did my exercises. Thanks, it makes me feel better to be doing something that should help
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hello everyone
Haven't been here for a while THANK GOD
I have a question that I no someone can answer
My neighbor had bc many yrs ago
She had lots of nodes removed but never had LE
She had an accident and they injected that arm
They told her after 10 yrs. u can
I never heard of that
Did anyone?
Thanks
Firekracker
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maybe unlikely but still possible, what is done is done so best for her to watch and try not to worry
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she is not worried
I am
And I would like to no if this is true
I was told NEVER
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My understanding is that you will always be at risk. Of course she's not worried. It's not her arm, nor does she have to deal with any consequences. I hope there are none. I find her attitude a little cavalier.
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kkemp, if the therapist put you in a sleeve with no hand protection, that's just asking for fluid to migrate into the hand. The glove will help a lot, and you should also learn how to do manual lymph drainage of the hand, to help work that fluid out of there. Another thought is to ask about wrapping, which uses special bandages to conform to your hand contours and apply compression in ways that a glove cannot.
Is your therapist truly qualified? I think it was poor treatment to not put you in at least a gauntlet with the sleeve. Here's how to assess the therapist's credentials: http://stepup-speakout.org/Finding_a_Qualified_Ly...
LE can be incredibly frustrating, and you've already got an unfortunate taste of that. With luck and proper care, you'll make some good improvement and I hope you can keep the swelling out of your hand. For now, I wouldn't put the sleeve on at all, until you have the glove and get more comprehensive treatment. Focus on elevating your arm, staying really well hydrated, and doing fist pumps several times a day: put your hand up in the air, form a fist and pump it twenty or so times.
So sorry you're here with us, but I think you'll find that our community does a lot to help each other.
Carol
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Firekracker: the person who told your neighbor there is no risk of LE after 10 years is WRONG. Her risk is lifelong if she is at risk. That is like saying after 10 years there is no risk of BC recurrence. Sorry the risk is smaller but I got a recurrence 15 years after a MX.
That being said if she wants to take risks with her arm you cannot worry about it. Just worry about yourself and your own lifelong LE risk. If you are worried about your at risk arm being used while you are unconscious, look into getting a medical alert bracelet.
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Kkemp, I wondered also (along with the lack of hand compression that it appears you may need) about the fit of your sleeve. There was a thread that had pictures of good and bad fits posted by OneBadBoob but somehow the pictures are not showing. She is going to try to find them and repost. Here are some of those pictures on the SUSO web site. (The same web site that Carol posted the link to above.) http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm
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kkemp, I had problems with swelling hand and fingers AFTER starting treatment and bandaging for LE also. What I finally did was get a custom garment but had the fitter adjust the wrist measurement by a full 2 cm, that is, increased the wrist measurement by 2 cm over what the actual measurement was, and I have had little hand problem since. I do wear a glove most of the time just for protection, but can go without it for several hours, wear my jewelry to dinner or theater without issues. This is after a full year of treatment. I think sometimes we get overly aggressive in treatment, and indeed, it CAN make things worse - I forget what it is called, but you can have a "reactive" lymphedema from too much pressure or too tight bandaging. Good luck, and if you are hurting enough to cry, get the garments or bandages OFF and call the therapist!!! Do not accept placations!!!
Today I participated in a new clinical trial designed to study lymph flow velocity in normal and LE extremities using MRI - not invasive at all! I hope they get some good information and can begin applying it clinically in the next few years.
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Linda, do you mean rebound swelling?
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Wow, good for you for getting in to that clinical trial Linda. It should be really interesting.
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kareenie my neighbor was brought by ambulance to the hospital
She is old and told them no but they did it anyway that's when they told her the 10 yr.bull crap
When she told me about it I told her that was not true and I was comin to this thread to get opinions
I wear the bracelet and no she doesn't
Thank u,yes what's done is done and she is not concerned
I was.
Xoxo FireKracker.
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Marple, yes, rebound swelling. Thanks!
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Kkemp: mostly, the LE bothers my hands and under arms. I've learned never to wear sleeves, without full gloves, with fingers. While you wait, you can buy some gloves from a pharmacy, no online sells the full ones. the ones without fingers, didn't work for me.
hang in there, it's frustrating till you find the "magic" combinations. hope you figure what works for you. your in my thoughts. 3jays
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I met two women that developed LE 20 years after their BC diagnosis!!
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LindaKR, I was just reading that the risk increases with age, especially as we have other health issues. Old age is not for sissies but the thought of aging is beautiful. Of course, I already have bilateral LE. Grrrrrrrrrrrrrr.
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Slammed my LE hand in my back door tonight.
Stupid. Couldn't begin to recount how I did it … but wow did it hurt!
Put ice on it … took an Advil, iced it off and on for the last few hours. Cut it too when the door slammed on it.
I've cleaned it, put antibiotic cream on it … of course that finger is extremely swollen … it's blue from bruising … I just hope that's all it is and there are no nasty LE repercussions.
Say it with me: GRRRRRRRRRRRRRRRRRRRRR
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Dawne, no matter how careful we all are, we've all done it. OUCH! I managed to do the splits on my freshly cleaned kitchen floor a couple of weeks ago. Thought I was going to die. Stretched out the groin muscle on the LE leg and had no idea it was bruised until I went to the PT a few days later. Fortunately I had iced it right away and that helped keep the LE demons away. Praying yours will stay away as well. Happy Easter. Sue
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Oh, Dawne-Hope and Sue, I'm so sorry! Ouch! Please keep us posted on the healing, Dawne.
Sounds like you've both done exactly what you needed to medically. As for the humiliation, chocolate is the prescription of choice for that!
Prayers for no LE repercussions, and a very happy Easter to both of you,
Binney0 -
Sue -
I am so sorry! Ugh. Thankful that you were and are Ok.Binney - I couldn't decide to wrap or not wrap this morning. I decided to not wrap … I put the kinesio tape on my hand and that's all. That finger is still swollen and turning quite brilliant shades of purple and blue but I'm ok so far. I slept with that hand elevated last night and fell asleep with ice on it. I got through the morning without much pain. Getting ready to put some more ice on it and take some more ibuprofen.
Chocolate … yes, chocolate!
Happy Easter to both of you as well! xo
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HI all,
I've missed you all !
Where do I begin?!
I'm afraid I'll be writing a blog here :>)
I guess I should begin by thanking so many for such loyal support...MUCH appreciated. I logged in fo the first time in (?) Over 6 mos?) and saw 6 private messages! Many of you have emailed despite my dreay and negative replies . THANK THANK YOU ...you're the best!Soooo, an update I guess.
I have not worked in 6 mos. Too many issues ......Cant do MLD ( recall brilliant flushed chest and swelling?) so I do not wear sleeev/glove as exercise exaberates all. even WITH compression.
Due for mammo MAY 5th. I firmly believe mammo is what cause the 'odd flare' DRS thought might be carcinoid syndrome, but I must have one. I had density in my ' good breast ' last time, and I really should get a 3 d mammo. Lucky to have new 3 D <not digital >close by.
Also- have several new health issues, the least of which is patella femoral syndrome. Knees were fine JAN. 18th . went to do a long CPR class and they have not been the same since. ugh ugh and grrrrr ( selected the right thread, huh ? :>)
Concerned about mammo with the lE .
Just got a call from Waterdance for May 1. *DESPERATELY* want to go- my ONLY connection with real BC ladies ( never did rads etc ) and I LOVED it, but I think the exercise will flare that ' thing' truncal LE . Also- probably can't lift knees in the water now. They asked if I could join yoga- nope (knees) Much prefer the water class anyway.
Seems like something is wrong with every part of me!
Why come back now ?
I think it's the upcoming mammo. Very concerned about chest swelling etc ... I dunno'. I need to do it.I have missed all of you.
I just could not get strong enough to even pop in...think of you all so often. Hope you are doing well ( as can be expected!)
Hugs to all,Laurie
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Linda
I know a lady who is 10 yrs out...she was just DX with LE :>(
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Laurie, welcome back! Sorry for the reason that brings you back, but glad to hear from you again. Mammos--ugh! Some do have trouble with them, so do make sure everything's under the best control possible before mammo-time. And plan to rest up for a bit afterward. Do let us know how it goes. Hopefully others will be along with some tips they've found helpful.
Hugs
Binney0 -
me, I do something like a facial, mani pedi or such just before all stressful tests! I also take a tylonel the morning of my mamos
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Laurie, as you know, we welcome all posts here-- even the dreary, I'm-so-depressed ones, because we all know that LE is incredibly hard to deal with, and when you pile on other health problems, well--anyone would find it hard to muster an upbeat 'hello.'
Good luck with the mammo. I'll be thinking about you on May 5th! And here's wishing you some clarity on how to navigate the health issues, and especially on finding some way to trick your body into accepting exercise, so you might get some of those wonderful endorphins that come with it!
Hugs to you, my friend--
Carol
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Thanks Binney, Carol, proud et al
Yes, I recall why I have missed you so much! Such a wonderful support team.
Carol
You hit the nail on the head. None of my news has been very upbeat and as things seem to continued on the downhill slope , it was harder to come back and post ...feeling like a whiner just makes you - well, feel like a whiner! :>)
But yes, I know how tolerant and supportive you ladies are and again, I thank you each and every one!0 -
Purple whine all you want - I do. I haven't said much on here but I have been struggling myself..
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PURPLE!!!!! I am SO glad to see you have checked in. Upcoming mammo worry, ugh!! Compounded with other issues, double ugh!! Butterfly hugs to you. (I just noticed, ugh and hug use the same letters.)
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, ugh and hug use the same letters
Good one !
I love it - thanks for the chuckle.Hey GMA! Nice to ' see you".
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Today I participated in a new clinical trial d
Linda
Thanks for doing that! Perhaps we will all benefit someday.
I have had rebound swelling from tight ( custom fit) gloves and also from kinesio taping.
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