GRRRRRRRRR I HATE LE..........
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Binney: i have a strange question tat neither the le therapist, nor any of the other drs. could answer...
for the heat in the summer, ple with ms wear vests called "cool vests' they have pockets in them, and they keep your core temp down...
would they be bad to wear with Le? they weren't sure about them with the bmx, but they'r ecovered, in little pockets, in the front, mostly.. not where the scars are at all. does somewaht cold contact make le waorse??
if no one knows, it'll be a watch and see project. but, maybe someone already knows??? 3jays
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When i went to my first LE appointment after the chemo/rads..and no hair etc..all the lovely things we have to contend with...my PT was furious with me for not wearing my compression sleeve and mitt. I responded that I was doen, emotionally and physically and that I did not want or need the reminder that I have this awful, stupid horrible bloody disease. I was just starting ti feel good about me, after 4 bouts of cdiff from wherever..anyway, the last thing I needed was a lecture from one with two very good arms..but i sucked it up..and now wear the compression garment and i have a response when people ask...i have breast cancer, but that is not the worst it handed me..I grew back my hair.
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I hate LE too..they do not tell you that this is the life you contend with after you survive all the elegant stuff. This is dailyu chronic and it pisses me off. I can't wear certain clothes because my right arm won't fit through the sleeve and the right breast, poor girl, the right breast always is a little lumpy or looking sideways, or with the bra that covers it higher because it is filled with scar tissue and sits differently in the bra. I wear my compression sleeve and glove most of the day until bedtime when I cannot wait to take it off. Contrary to the LE therapist lecture, people do notice it and they hestitate to shake my hand because of the glove. Grrrrrrr I agree! My right breast is so sore from all the scar tissue and edema, I noticed the swelling during LE therapy ans asked if this was ok...the edema moving from arm to breast. The therapist said it was a bonus...??? Binney what do you think? should I be concerned about LE in the affected breast? Maybe that is why my chest wall hursts and my right breast is sooooo painful!
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Rewayland: A bonus??? Breast LE is very common--a recent study showed up to 60% and it should be treated with MLD and compression. LE can migrate to include anywhere in the quadrant: breast/chest/back/trunk/arm.
Breast/truncal LE should be treated. Anytime our LE migrates and involves a new portion of the quadrant, it should be treated.
And yes, it is shameful and it is stigmatizing, and if the LE therapist can't grasp that, they're clueless.
I had a LE PT who wouldn't see me unless I was fully garbed--as I usually just wear a custom glove, I would put on the sleeve in her parking lot.....
I had an LE therapist go on a rant that people didn't wear compression due to vanity--no it's stigma.
Have you checked out the SUSO page on chest/breast LE--there's a good article from journal of lymphoedema on the page--show it to your LE therapist, perhaps, to teach them:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm
Perhaps this therapist is not the perfect fit for you?
Kira
(I tried a signature line: but I AM afraid of storms, just wish I wasn't.....Time for a new quote.)
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Rewayland, "bonus"??? NOT!
Did you deck her?Treating truncal/breast LE reduces the pain as well as the swelling, and the sooner that happens for you, the better. Anywhere you could get a "second opinion" from another therapist? Keep us posted -- I know you just want to be done now (yeah! I sooooooo get that!
), but you really CAN get to a better place if you have the therapy help you need to get there. 3Jays, a cooling vest is a fine thing for LE as well as MS, but the degree of cool (and the weight of the vest) are both factors you should consider. Here's a review of one that sounds like it might be appropriate for both conditions:
http://www.activemsers.org/gear/reviewcoolingvest.htmlBut even that one can be frozen before wearing, and that would probably be a bad idea. Chilling in the frig would be better, once it's charged.
Last summer (or maybe the year before) we had a long discussion here about cooling vests for LE, but we weren't talking about the ice-on-your-chest kind, which could be a serious temperature extreme for the LE.
What a balancing act, 3Jays!
Maybe "balancing multiple conditions" will have to be another one of our LE Olympic events, and you're going to be sure to win that one!
Let us know what you come up with.
Big hug,
Binney0 -
I wear my sleeve and glove basically all the time while I'm up and I don't worry about shaking hands. If in a situtation where it is appropriate to shake hands, I'll be the first to offer my hand. If someone is hesitant, I just hold it out til they do. It's their ignorance and rudeness so just put it back on them. I have nothing to ashamed of at all but they might so that is their issue that need to own up to.
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My only issue with some people shaking my gloved hand is when they squeeze and shake it hard - I don't know why, maybe to prove they are able to treat me like my my hand is normal and they aren't put off by the glove? The last person who squeezed really hard, I actually said "ouch" because it truly hurt, and they said they were sorry. Maybe they weren't paying attention? I find it hard to believe they didn't see my glove when I extended my hand. If someone extended a gloved hand to me, I would: 1) assume they are willing to shake my hand, and 2) they may have some kind of medical condition that requires going easy with the handshake. Maybe I need to extend my other hand if I am not in tip top shape at the moment?
So far, I haven't felt odd or stigmatized with my sleeve and glove since I feel this is the new me and I am getting comfortable with it. Haven't had to attend a formal or dressy affair yet, and I might find that challenging emotionally. Wrapping is another story, but even then I find most people assume I have some kind of injury. My stock answer when I am asked about reason for bandages or glove is "swelling" and leave it at that. I had one woman who actually asked me if it was LE and I said yes. Turned out her mother had breast cancer years ago and has very bad LE that wasn't treated optimally over the years but is now getting wrapped. She was very kind and compassionate in a way that really made it feel okay to share.0 -
I've never had anyone be 'hard' when shaking hands. - some l will shake like 'dead fish' so they get squeezed hard - my hands are very strong.
I don't feel the least bit 'odd' or 'stigmatized' - why should I? IF someone had a problem with me takning care of my body - then it's their problem - not mine - and I don't want anything to with them unless I have to.
There are sometime though that I don't wear sleeve or glove - special events.0 -
Binney- Hmm, might have to get some of those racing stripes for ours! lol!
So after 3 days of being pretty much pain free I woke up this morning with my arm swollen again and hurting. I didn't do anything physical yesterday so I'm guessing sometimes there's no rhyme or reason to the LE flares? Also, Thursday I went for a bra fitting and noticed in the dressing room mirror that I had rolls on my back. After checking on the SUSO site I'm realizing this was what truncal LE can look like. The next day it was gone, though. If you have it on your back is there something more your PT should be doing? I've always just been lying on my back when she does the MLD. Luckily, I have a PT appointment this afternoon and again on Wednesday.
Hope you are all having a pain free Monday!
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Binney or Kira or somebody once posted that treating LE is like playing whack-a-mole--just keeps on popping up, moving around, keeping you guessing. I think that's what you're experiencing. Snarl, and say grrrrrrr!
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Kate, sometimes there is no rhyme or reason. Yup, whack a mole is right! For what it's worth, when I am in the midst of a flare or feel more swollen than usual, I try to pull out all the stops with anything that might be adding to the LE "load". I limit caffeine, alcohol, salf and salty food, and personal triggers I have noted, such as fermented items like vinegar, tamari sauce, beer or wine, and extra spicey foods. I try to drink lots of water, get plenty of sleep and practice lots of deep breathing. Oh, and stress does it to me everytime! I have noticed during or after an argument with my husband I sometimes feel a little swelling. I now recognize and remind myself to breathe, try to minimize escalating discussion, or extricate myself from situation. These are usually silly arguments that occur when one or both of us are tired. I have learned that I don't need to be right sometimes if it means feeling swollen and crappy!! :-)
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Kate, by all means point out the need for back treatment too! Let us know how that goes. It may actually be a recent development, since you just noticed it, and the rising heat is definitely a factor -- 104 degrees yesterday means you're likely struggling with that. (I sure am!
) Ah, summer! (NOT!)
Binney0 -
Add "whack a mole" to the Olymphics! That's one area I might be good at.
Oh, Kate, it is so frustrating, isn't it? There really can be no rhyme or reason - other than the obvious triggers Tina mentioned - although I hadn't given the argument/stress trigger any thought. I had wondered if the pollen count, allergies kicking in had anything to do with it for me? I got the back, truncal, side rolls (hard to miss when you are otherwise skinny) a few months after the arm LE. I actually had the first PT tell me I couldn't have breast LE b/c I didn't have a real breast? Huh? I fired her. The back is hard - it's impossible for me to reach - but I have learned with my LMT how to get into the rib spaces on the sides and I use a paint roller for when I just feel I need to have my back massaged. Definitely have the LMT do your back. I hate how I wake up feeling trim and skinny and by end of day, I have these rolls that creep and make me feel fat and frumpy. Thank goodness for compression.
Binney (and Kate too) - 104-degrees?! Oh yikes. I always wanted to retire in the AZ area - love the "dry" heat (great for my curly hair) but now I don't think I could handle it with LE. Although, even if I were dressed lke a mummy, my hair would look amazing! LOL. It's always something....
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I am dreading summer and mid-May trip to FL, as August is the month I usually want to lock myself inside because of my truncal LE. Have no idea how new arm involvement is going to behave. Catherine, anything that causes additional inflammation, and I would think allergies fall under that category, can cause swelling. We have talked about how having the flu or breaking a bone in different area of body or an illness of some sort can cause a flare or additional swelling. Seems to be that a systemic overload is enough to stress lymphatic system.
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Just to take credit: it was my amazing LE therapist who told me that LE is like "whack a mole"
And, I've been completing this STAR course (Julie Silver MD--has a whole module on LE, with much of the information in error...but they address the subject...when I have energy, I'll report the errors to them) in oncology rehab, and they reiterated that "sickness" symptoms in cancer patients are due to inflammation--the whole cytokine, interleukin mess.
And Andrea Cheville talked about addressing any tendonitis in the area with LE as inflammation causes more swelling.
Fish oil for all of us--it's the whole anti-inflammatory diet thing.
Kira
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Thanks for all the tips everyone. I will try to cut back on caffeine, salty foods and wine but those are my three food groups!
I just got back from PT and definitely have some swelling in my back by my ribs so she did MLD there, too. Boy, she has her work cut out for her with me- bilateral LE and now truncal, too. Whack a mole is right! Catherine- Maybe you can just be a "snowbird" and come here in the wintertime! You'd have beautiful curls 6 months out of the year, anyway. Yep, summers are tough and this one is going to be particularly hard.
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Thanks for the Omega recommendation Jo. I just learned from my Dr. that the fishoil is best taken at night - apparently something about the way it metabolizes and decreases inflammation/repairs while sleeping? who knows, but if I don't have to deal with the "fish reflux" while sleeping, i'll try it.
Kate, I'll come be a snowbird for sure. I've cut down on coffee, but can't get rid of it completely. I just make sure to increase my water intake now. Wine - well, I can switch for a more "pure" vodka if that might help but heck, sometimes you just need to be social and I can't give up "living". I do resist obvious salty foods now - no more kosher pickles at the deli, no popcorn at the movies.....but like we said, sometimes there's just no rhyme or reason so try not to make yourself crazy!
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thanks, Binney, for the link.. i DO have the best one right now, but its' heavy.. i hadn't even thought about that consideration!!!
so, i'll be in touch with my cigna navigator.. they're really good about taking the le into consideration.. no problems to do my custom garments. thank goodness.
i like the one you sent, so having my onco rx me one.. or two...
i have to avoid salt like the plague, Kate.. i don't drink, so wines' no problem.. but salt!!oh boy.. aHUGE trigger...
its been really stressful with this "clean up" and the night we moved to the hotel, it went down to 50 which is a bad cold front for us, so yup!!!im wrapped like a mummy for now... the good news, with all your help esp you, Binney, im handling my own..
i don't even care what ple think anymore, about the sleeves/gloves.. i love the black, but the next pair will be lighter colored. i have another one i can order , for this year.. thanks, binney, for the reminder to keep the old ones..
the old gottfreid was /is great, not too stretched out compression wise, but the short gloves really have "bacon neck" from pulling them up.. the new ones, they customized wonderfully.. longer at the wrist, and they made the " dots" wider on the top, and added them to the top of the gloves.. that helped a whole lot.. those of you that get custom gloves, get them to add them, they work great!!!!3jays
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Hi all, I don't post often, but read every day.... Just wanted to say that regarding fish oil, there is a prescription form of omega-3-acid ethyl esters, (rather than OTC), called LOVAZA, which is generally covered by prescription drug plans. Many docs seem not to know about it. Each pill contains 465 mg EPA and 375 mg DHA. No fishy taste or aftertaste. Not that I'm a fan of the FDA or anything, but health food store stuff is generally unreliable when actually tested for content. So if there is a choice, and especially if it's covered by insurance, why not !
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3Jays, your Navigator sounds like a real gift! Let me know what you think of the vest if you get it.
Hugs,
Binney0 -
Brownies anybody? I ordered some stuff from Pink Bra and it came today. The bathing suit Fits! Yeah unfortunately the foob I have does not work with it. grrr. Glove seems to big but I want to wash and dry it before I give up on it. My hand looks good and I may be able to go back in my other one now anyway. However on our hot days of summer I may need the one that is a little big big. Darn. I also ordered a bra a plus side friend recommended. I give the support I so needed and the foob fits great in it but I wore it for four hours and yes I am now puffed back there. The bra stops right at the dog ear area. Looks like I am going to have to have a bra that comes up and over that area. So it is no longer a theory. I haven't swelled much with the other bra.
grrrrr brownies are now being passed your way.
I recently tried Omega 3...CVS brand. I was nauseated all three days I took it. I am willing to try a different brand. Now for my chemo brain to remember to look for it.
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Omega 3 - My PCP mentioned LOVAZA when my cholesterol first went up, but I'm really happy w/what I'm getting at Costco. No fishy taste & no reflux. I've tried other brands that had me burping fishy tast all day. This is labeled 100% Natural Omega-3 Wild Alaskan Salmon Oil, 1000 mg, cold pressed, extra virgin, mercury free. I take one in the morning and one at night. My hair & nails love it, along with the added 400 IU Vitimin E.
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Do you guys have a list somewhere (or on another thread) about brands of compression bras and/or camis that you get, especially that insurance covers? I just got fitted for a bra (had lumpectomy) to help with mild truncal LE...under armpit and under breast. I do NOT like it. Worn it twice. It's comfortable and seems to support well, but it has velcro straps and the straps are so wide that I can't wear any shirt with it except for a t-shirt, and not a dressy one but the kind you wear to go to the gym. I can't find a single shirt that it doesn't show either the straps or the bodice, even with a modest neckline. Besides that, the velcro part sticks up (doesn't lay flat) and so I have two little bumpsjust above both breasts. ACK. I don't have a certified LE specialist, but the OT I work with has a specialty with LE (has taken a number of classes and works almost exclusively w/BC patients). I have been very pleased with her and the things she does seems to match what I hear many of you saying about your tx. She coordinates with a women's orthotics company and the rep came to my 8:30am OT appt, which was great as the company is 70 miles away. She also works alot with BC patients I guess. I am hoping when I see her Friday (she is ordering me a cami too) that when I return the bra I can maybe ask about some that you guys recommend. Some of you mention custom-made...what I have is most certainly not custom-made. Would I be better off with a sports bra of some sort? I've been wearing tighter camis since Nov and only wear a sleeve for flying, but OT felt that with summer coming on I might get better results (and quicker) with a compression bra, even if I wasn't wearing it all the time.Would it make a difference if I wore it at night (when straps showing doesn't matter) or is that counter-productive?
Lots of questions-sorry!0 -
Have you read up on Step Up Speak Out?
Cami's
http://www.stepup-speakout.org/Compression_camisoles_lymphedema.htm
Compression Bras
http://www.stepup-speakout.org/compression_bras_lymphedema.htm
I have a Bellisse Bra. I can't say that I liked it because he fitted it way to small, It did keep the fluid down but since I now have truncaI don't even bother to wear it because it just rolls up thanks to the tummy swelling.
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***URGENT*** HI Ladies, I will be posting this issue on various threads, because I need a pretty quick response, so thanks you to anyone who can help/share: This question is for my mom. BACKGROUND: She just finished radiation. Not sure how many treatments, I think it was for 5 weeks. She was stage 1, and this is her second cancer episode, first time was 10 years ago (me, her and my youngest sister have all had breast cancer twice each, and each recurrence was 10 years later...)
OK QUESTION: mom just called me her radiation dr told her she has cellulitis (last week) She has been on a sulfur oral antibiotic and has had no relief, hot-to-touch rash on rad site and tenderness.
Now I have had my own issues with cellulitis, I have had many episodes (over 40) and have only had it 2x with out a fever present. so I wonder... I also had a lot more rads then she did, so could it be radiation burns?? That she has?
I finished rads in 2009 and lost my skin etc, I did not end up with a hot to touch rash that was from radiation - that I am aware of, I did have hot-to-touch cellulitis issues (that started way b4 rads ever did) and was usually accompanied with a 103.5 fever.
Mom has no fever. The rad dr gave her an oral antibiotic a week ago and it is still hot-to-touch.
COULD THIS "JUST" be a radiation burn??? (I HATE to say "just", I know how hard it is...)
If not, I have to assume it is cellulitis, like the dr said, but I know how hard it is to dx this animal.
Mom is in FL I am in MI so I cant look at it, she says the "rash" is on her chest on the radiation site. In my case my rash went up my arm, and across the chest and back...hers is not spreading...so I wonder if this is just a rad side effect and NOT cellulitis???
The problem is she has heart issues and has also had c-diff in the past, so allowing a strep bacteria unattended is a real bad idea, and having IV antibiotics would be hard too (due to her
c-diff history).
She is ready to go to the ER, either way I told her that this should not be treated by her rad dr, that she needs to see an infectious disease dr.
Suggestions? comments?
Oh, and just in case can anyone recommend an Infectious disease dr in Ft Lauderdale area? THANKS Terri
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Hi Ladies, I came to rant but ended up going back to the end of March to catch up.
Some of you have had a hell of a month! Blessings, Love and Hugs to you all.
Now for the RANT. Maybe I should be mad at myself for not speaking up more forcefully.
I went for a consult about reconstruction. If I do choose to consider a flap procedure I would need to have an abdominal and pelvic CT scan to make sure everyting is cool because of a previous pelvic surgery. So, when the tech came in to give me the contrast IV, I said that I need someone who is highly trained because the only place I can be tapped now is the top of my right hand. She said, "don't worry, I do this all day long". So I trusted her. I can't look when a needle is going into me anymore; call it post tramatic chemo disorder.
I did not realize she poked me twice until I came home and took the gauze off of my hand and saw two holes. Immediately the top of my hand swelled up about a half and inch. I iced it right a way and now I have a hematoma from my wrist to my fingers. This was last Friday. I did call the office as soon as I saw the swelling but they said "it sometimes happens". I think it was the same woman who did the poking.
The lesson I learned, and the one I hope you all will carry with you as you read this is to INSIST on an IV Team AND a pediatric needle whenever you need to give blood or have a procedure where you need and IV.
I only hope I can use this hand again for giving blood. I'll find out in a couple of weeks when I need to go for bloodwork for the family doctor. Thanks for listening. I really needed to get that out.
GRRRRRRRRRR I HATE LE...........
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I know it has been three hours since you posted. I think I would seek a second opinion. My skin was very hot to the touch from my radiaiton. Red and some areas third degree burn. After it healed I broke out in a rash and turned out I was allergic to Eucerin products I was putting on the burn area. Good Luck and I hope all is well soon.
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thanks!
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Hi Ladies.......long time no posting..............fed up with LE.........never got the custom sleeve, because everyone screwed them up.........have a regular compression sleeve, that I don't think does "crap"...............when I remember I put it on................don't exercise anymore, just disgusted with the whole thing..........................probably not good, and will be sorry, but right now I'm fed up......................sorry for venting.................hugs
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Ducky, I am sorry you are having such issues with your garment. I sent you a PM.
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