GRRRRRRRRR I HATE LE..........
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Hello to All and hoping you are all Hanging in with all the GRRRRRRRRR!
I have just gotten a taste of what it will be like in hot weather with Truncal LE/ plus jovi serratus pads x2/ compression sports bra/ under armor short sleeve for heat gear/ sleeve and glove. This is my first summer with the Truncal.
If any of you have time, please check out a thread I started in Not Dx w a Recurrence or Mets but Concerned....Binney and Kira HELP! This is my first thread eva. Named The Sword that Dangles Always. I can't figure how to paste it here, and I do need expert advise on my situation. It is r/t mild lymph node enlargement on both sides of my neck and 5 larger Nodes.
My Surg. Onc mentioned that I just may have enlarged nodes d/t Truncal LE.
Any of your experiences with any of this would be greatly appreciated.
I am having moments of big time SCARED.
Love and Hugs to you All. I am way overdue for a brownie session under the bed.
brazos
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Grrrr! Every time I get on BCO on my Ipad I somehow unclick my favorites so missed a week on here and trying to catch up.
Brazo- I can't offer any advice but hope everything ends up o.k. for you. I understand your fear.
Finally got my sleeves today! Never thought I'd be happy about that but when your kitchen floor hasn't been mopped in a month well.......
These have less compression and so far I'm doing o.k. with them. In fact I'd say my arms feel down right cozy but a little itchy. Any advice for itchiness?
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Cindy2, when they did my bilat mast on me, they put the IV in my neck (not as bad as it sounds) and did my BP on my leg. If you have any nodes removed, even a SNB that limb is at high risk for LE. I had SNB (3-4 nodes each side) on both arms at my bilat in 2007 and I have slight LE in my left wrist/hand (side with 4 nodes according to my path).
Sheila
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Ducky, there is some overlap between hereditary LE and the LE we get due to trauma. So you may have a tendency to swell in the legs more than the next woman. Likely it's due to the heart issue and fluid shifts and you should check in with your doctor, and consider some mild support knee highs. So many of the women on this board have some swelling in their legs.
Cindy--technically the SNB arm should be "at risk" also, although some women make a decision--like LindaLou--that they'll let that arm be used for blood draw, blood pressure--with caveats--only butterfly needle sticks, little tourniquet use, manual blood pressure. The other option is leg draws and ankle blood pressures.
Avoiding LE: don't lift your arm above shoulder height for 10 days post op, lots of fluids and deep breathing, and check in with your LE therapist.
Brazos--technically LE does not cause swollen nodes, yet we've had a couple women on this board report it. I wouldn't attribute it to LE, but it doesn't mean a recurrence either. I'd have your med onc check you out, and evaluate it the way they would for any woman with enlarged nodes. Do you have a sinus infection or any illness that could cause enlarged nodes? Mono enlarges neck nodes.
It's sooooo hard not to worry, but ignoring it, as the surgical onc suggests isn't wise either, IMO. I'd take the middle ground and not attribute it to truncal LE and have someone medical follow you and evaluate you. Please let us know how you're doing.
Hugs to all, and LE stinks.
Kira
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Thanks Kira...................I was to the Cardio about 2 weeks ago.........he saw the swelling, and said Femara does that........this happened all of a sudden...........whatever it is.........it is annoying, can be painful, and I'm not happy...................oh well thanks cancer....................
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So I wore a sleeve to a family event and people freaked out about it. I actually took it off, to calm everyone down. It was my best looking barton carey all in one that can almost pass for a bizarre fashion statement.
One relative who had BC had never heard of LE!!!!!!!!!!!
Sigh!
So hoping relatives would take it in stride.
Then some lady on the subway and decided to regail me with her whole BC story. Normally I would be fine with that, but I was exhaused and just wanted to read.
GRRRRR
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I just graduated from LE PT! Yippee! She took my measurements one more time and every single one was down. She checked my sleeves and gave me the A-OK. Then she pushed me out of the nest. lol!
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Cookie, relatives are the hardest. I'm so sorry they freaked.
I have to apologize, though, because I couldn't help laughing at the visual of you trying to read on the subway with some complete stranger giving you a blow-by-blow of her bc experience. Such a Sisterhood this is!
Kate, congratulations! Did you toss your mortarboard in the air? Or maybe your bandages. It is a strange feeling to be suddenly on your own with this unpredictable condition, but Therapist Jane is easy to connect with by phone or email, and she gets it that "chronic" means we'll always need to keep her handy. Chocolate is in order! (Only you'll have to eat it fast before it melts--can you believe the temp today?!!)
Hugs,
Binney0 -
Binney- Thanks!! Yep, I'm sure I haven't seen the last of Jane and she gave me her contact info just in case so I feel a lot better about being on my own. Time to dive into those peanut M&M's (melt in your mouth not....) that I have stashed in the fridge. Today's heat was positively gross.
Did anyone get a PM about some new lymphadema social network from someone named lymphedemanet? Not sure if it's spam or what.
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Yes Kate, I received one too, it's spam and the mods have removed them.
Cookie, that so sucks about your family event. Reactions like that beat us down when we are feeling most vulnerable.
Hugs and chocolate for all.
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Cookie, you had to take off your sleeve to calm them down??? Would you have to stop your insulin if you were a diabetic???
That said, when my mother came for a visit, she called my sister in tears, that the sight of me wrapped was so upsetting to HER. Of course my family has the emotional maturity of middle school girls, so she didn't tell me directly and I heard about it from my other sister, and then confronted her: and she said, sobbing "It's just so distressing!"
Get over it. It's my arm, and histrionics aren't supportive, they're all about her.....
Think of the passive aggressive nonsense of making you remove your medically necessary garment to soothe their sense of whatever.
I just watched a video from the Foldi Klinic, and imagine this high class British voice, showing young, athletic women wearing compression in the Alps, after successful CDT, and saying, "with compliance, patients with lymphedema can lead nearly normal lives." Nearly normal....
We need 3jaysmom to throw them under the bus.
Kira
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Cookie - you are waaaaaay too nice to your family - my feeling is that I'm the one dealing with cancer and LE, and if they don't like it they can lump it. Geez - would they have made an amputee cover up an artifical leg??? But I understand your instinctive reaction to keep family harmony when faced with unexpected drama over your sleeve. So they caught you by surprise this time. Next time you'll be better prepared for their reaction and can have a plan all worked out in advance on how you're going handle their overly-dramatic reactions.
Had my last session this week with my fabulous LE therapist - she's moving to Colorado in July. Now I have to start all over with someone else. This is the second LE therapist I've been through - my first one retired. The one I'm losing now had actually gone to Germany for training, and really "got" truncal LE.
Plus the local company I've been using for compression garments is now longer "in network" with UHC.
GRRRRRRRRRRRRRRRRRRRRRRR!
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Kira- Maybe we should all get t-shirts, that we wear with our sleeves, that say "Nearly Normal"!
Oh well, normal is highly overrated anyway!NatsFan- Sorry you're losing your LE therapist. I've already become attached to mine after only a few months so understand how hard that would be. Like losing our shrinks or something. (Hey, they are kind of like shrinks! They make our arms and trunks shrink!)
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Hey I am waaaay ABOVE normal!---almost nearly!!
nats--sorry about your therapist loss. I would throw myself under 3 jays bus if mine left!
cookie--I just don't get it. My family just seems used to my sleeve and no comment is ever made anymore. I even got a white one for summer and no one has noticed. Have they ever seen you wrapped? I am sorry yours feel that way.
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Cookie, your experience with your family upsets me terribly, so I can only imagine what it was like to have that directed straight at you. Not only does it sound like passive aggressive behavior, but an attitude that demonstrates their comfort is more important than your health and wellbeing. Since they truly don't get what this is about, I say fudge it a little and say your arm hurts when you don't wear the garment, which prevents you from enjoying the family function. Maybe they will be more understanding of physical pain if they don't get that it hurts/harms you not to wear garment. The bottom line is that when you don't wear the garment like you should and swell or have a flare, it is painful physically, psychologically, and emotionally. It really makes no difference when you experience the pain, then or later. Plus, if you do swell as a result of not wearing, you also have the stress and anger toward your family and annoyance with yourself for taking it off. It's bad enough we have to come to terms with this stupid chronic condition, but it's crazy to have to baby relatives over it.
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Cookie I don't believe your family, my family all took my LE in stride. Even my small great-nephews (3+6 years old at the time), the first time they saw my hand in the gauntlet, gently patted my hand and said I hope it gets better soon. And when we were holding hands for prayer they were afraid that they would squeeze my hand too tight when we said I love you so they held on to my finger.
Sheila
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cookie KEEP your sleeve on!!!you're the one with the consequences, if you don't not them..
and yes, Kira: my oldest jay doesn't "like it" when i take my insulin for diabeties when my Grands are there, in the resteraunt!!(what a jerk!!!)
the compromise was, i got the "pen" i guess the drawing was the big problem..
my 4yr old GS says.. NO NANA!@!! don't eat, use your stuff first!!!
we had the whole discussion nana has to take a teeny needle to make my blood eat my food.. my SON wanted me to go in the bathroom to take it.. very sanitary.. ehh???
cookie, we can choose our friends, but we inherit our family.. these I RAISED, and they're still idiots.. (bus on the way)3jays
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everyone here, think of who needs to go, and when the bus comes..THROW EM UNDER!!!!!(as many times as you want till you feel better...0
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throw em if ya got em...3jays 0 -
kira: thanks for the info ie: swollen neck nodes. with the persistent bacterial sinus infection (yes, its back again, im on topical vanco in the nose AGAIN!!) i asked the ent f it could be le or swollen nodes, and he pooo pooed me. he said "you haven't SEEN le.. so the next time, i didn'twear my sleeve, or truncal that day, till i saw him.. he just looked and siad "OH".. i see him monday, so i'll ask him about my nodes again. they're swollen right where we clear for mld, which im doing a LOT these days .. amybe its the heat. i think maybe breast truncal, but not sure. a little more spread to the front than the dog ear area was. going to le therapist soon for another eval. its been awhile.. its so hot in so fla, WHO KNOWS!!!3jays night0
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3jay, do you like to try natural methods of dealing with bacterial sinus problems? try taking Olive Leaf Extract 3 times a day. it is a capsule of dried crushed Olive leaf, studied have proven that olive leaf is a natural anti bacterial and anti fungal. check out this site about the benefits of Olive leaf, http://www.herbwisdom.com/herb-olive-leaf.html
I have taken it when I have sinus infections that don't respond well to antibiotics (after 2 rounds I go with the OLE) as well as yeast infections from taking antibiotics.
Sheila
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I got so fed up with the bullshit questions, and comments, when someone would say "oh broke your arm",........I would say........"no, cancer, do you want to hear my story"...............amazing how fast that shuts them all up........................
One time, I was so down about my LE, and at the nail salon a woman said to me as I was paying..........oh what's wrong with your arm......................I said ..............cancer....................she said "oh that looks so awful........................pissed I said "and so does your face, but at least I can cover up my problem".......................the whole salon roared..............she left......................
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Ducky, I had one of those days the other day when I was just so sick and tired of explaining my wrapped arm. No wonder I usually stay home on 'wrap' days.
I can SO relate.
I think instead of saying I have LE (which nobody seems to have heard of), I'm going to take a page out of your book and simply say CANCER.
Hugs.
Edit to say, and wouldn't I just love to add........."they think it may be contagious".
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Remember the spam that was circulated here the other day, announcing a 'new social network for individuals with lymphedema?' Turns out it's a site started by a surgical resident who is learning to do lymph node transfer surgery. Binney and I each looked at his site is some detail, and unfortunately it's an automated Twitter-fed, robotically generated collection of Twitter comments and various websites.
Binney immediately noted some old, inaccurate content and sent the doctor a note; his position is that visitors to his site need to be responsible for knowing that not all Internet content is accurate. I sent him a note to suggest that the minute he puts his name on the site, the content becomes 'his' and I think it's irresponsible to just aggregate content that is supposed to be helpful to individuals with LE, without even looking at it to see if it's accurate, useable information.
Methinks the young doctor is trying to drum up business. Not sure he gets the 'do no harm' part of the job.
Carol
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Medical ethics???
Once again, he violates the HON code: http://www.hon.ch/HONcode/Conduct.html
Since he puts up bad medical information with his name on it, and solicits business on bc.org and has been kicked off as spam: I do really wonder how his residency director and chief of department would consider his actions, as by all rights, he deserves to be disciplined for unethical behavior.
He needs to know that misleading patients and soliciting them unethically will reflect on his professional standing, not to mention his license...
Kira
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Ducky and Marple...I so feel your pain.
I had an amazing weekend, but the LE and the questions were so frustrating.
For 4 years I have wanted to go camping at a music festival.
It's been a bad weekend every year for a dizzying array of reasons.
This year we made it happen.
I had an amazing time.
I danced till I literally could not move.
BUT
Camping with LE is really hard. It's tough to change clothes in a tent at nite, let alone LE garments.
Rain, dirt, velcro, campfires, grills, are all enemies of LE garments. Putting up and taking down the tent was especially rough. I should have worn an old ripped glove for that. Also alcohol tends to make me swell.
Plus I had people asking what was wrong with me with loud music on, so I really was at a total loss how to reply at all.
I normally am pretty straightforward, but this time I just didn't want to get into it.
I wore long sleves most of the time, but I find guantlets uncomfortable and worthless, though they seem to attract less attention.
The lavender glove came in handy though...it's just odd enough looking that people didn't know what to make of it, and my raincoat is lavender so it just sort of blended in.
I put on a dress and skipped the sleeve for about 2 hours, but wore it most of the time.
I also totally worry about bug bites, but they did not seem to be a problem.
I am glad that I did it, but I am not sure I really want to camp again.
Then again do I really want cancer to take something else away, especially since right now I am healthy enought to enjoy it.
Sigh!
The only grace note was that my breast really did pretty well, despite no belisse for almost three days.
All that jumping around is good for the breast LE I think.
I do tend to get a rash when I am in the sun a lot, even with tons of sunblock and cover, but all things being equal, my arm could be a lot worse today.
I just am kind of bummed how inconvienent the garments are for outdoorsy stuff. The good news is I seem to be able to dance a lot with out a flare.
Have a great week everyone!!!!
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Cookie, I'm so happy for all your triumphs despite the very difficult limitations of having to use compression garments.
Really, what an encouragement you are to the rest of us! OF COURSE it's a bummer, but you DANCED, doggone it!
Brava!
Binney0 -
Happy Dancing Cookie!!!
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Ok ladies, Grannydukes said to come over here and tell you all what is going on.
Since radiation I have had trouble with pain and swelling in my right breast... My RO, MO, and surgeon said it would just take a while to heal... just give it time...
In Jan. (I think) I put my foot down and got myself a pain management doc. I'm on gabapentin for the nerve pain. That seems to be helping the shooting, bugs crawling inside pain... Being I can't take anti-inflammatories he had some creams made up - one for my breast and for my neck (I have issues there since radiation). The cream for the breast helps kill the pain in my breast., but I'm still swollen under the node disection scar in a line toward my (3 inch scar) where the took my nipple and lump. I also have another line in the bra line under and to the right of my breast to the scar.. When I exercise, walk, garden or when the weather gets hot, I seem to feel fuller in that breast, almost like it hardens. I have been back to the RO and the surgeon about 6 months ago and they said the mammo was fine and nothing is wrong.. The RO went on to say, "why don't you try some of that cream for your neck on your breast"! That is when I just walked out and said I obviously am done with him.
By the encouragement of Jo and Granny, I called my surgeon and asked for a referral to a LE therapist.. thinking Breast Edema? He wouldn't give me one until he saw me.. My appt is tomorrow..Weds. I don't feel strong enough to fight this... I need some input on what to ask and what to say... He is a nice doc but I don't know if any of them have a clue.
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GmaFoley, I'm so sorry you've been struggling and suffering for so long. Any doctor on your team can write you a referral for an evaluation by a lymphedema therapist, even your PCP. Many doctors (including breast surgeons) are entirely unfamiliar with breast lymphedema, so they don't recognize it or know how to refer for it.
So it will help if you have an idea about the lymphedema therapists available in your area. Here's information about how to find well-trained ones near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
You might want to call them and find out how much experience they have with breast/truncal lymphedema.Here's information for you about truncal lymphedema:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmAnd here's information for your doctor, written by a doctor, about lymphedema:
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htmI sure hope it goes well tomorrow--please be sure to let us know!
Hugs!
Binney0
