GRRRRRRRRR I HATE LE..........
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Aw, Kitty, a chocolate bunny is a fine thing!
Happy Easter to all. Samsue, the day sleeves can twist or slide down while you sleep and cause a tourniquet effect -- with the same effect as a blood pressure cuff.
Try propping your arm on pillows at night. It takes two or three for me to get comfortable that way. There are some pictures of suggested positions on the RIBP page on StepUp-SpeakOut, here:
http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm#sleeping%20positionsCCL I means compression class I, usually 20-30 mg/Hg:
http://www.stepupspeakout.orgMillimeters_of_mercury_and_compression_classHope some of that helps. Sleep well!
Hugs,
Binney0 -
Thanks Binney, I'll prop my arm on a pillow.
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Again I am not sure if this is where I should ask my question--but there is no other forum under this category. I was told not to shave with a straight razor because of the LE but with an electric razor. I bought a Remington for Woman one. I have been shaving my legs with it with no problem. I have shied away from shaving under my arms due to the node scar. Yesterday I decided it was time. I decided to do only the unaffected LE side yesterday and the affected side today. Good choice. About an hour after shaving the unaffected side I developed a huge rash in and under my armpit. It drove me crazy all day. I put antibiotic ointment on in several times and this morning. Needless to say I did not do the other side today. It was so inflammed that I was afraid it was cellulitis. My therapist looked at it and said it was not. It is much better as the day is wearing on. She said I might have had some major problems if I had shaved the affected side. Anyway....any suggestions? Has anyone used Neet or Nair? Or do I just braid
? I am afraid I am going to become a hypochondriac. I usually don't break out. Could it be the razor? Thanks.Becky
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Becky - I had the same issue with an electric razor - I believe it was the Remington wet/dry, which I only bought after reading fabulous reviews online.
After experimenting with the Remington (wet, dry, different shave cream, etc) and still coming up with a nasty red rash, I gave up. I finally treated myself to a brand new Venus hand razor. I shave myself verrrrrry carefully in the affected arm (especially because like so many of us I'm totally numb), use a good quality shave cream, and I always use a new blade whenever I do my pits. I've been doing this for over 2 years now, and so far so good. I know it's a risk, but I've had no irritation there whereas the Remington was nothing but problems.
Fortunately ever since chemo my pit hair has been very sparse and slow growing, which means I don't have to shave nearly as often as I used to, so that helps too.
Braiding!!! Love it!
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Becky, give yourself a well-deserved pat on the back for testing it out on the non-LE side.
YES!!!Here's the StepUp-SpeakOut "Coping" page razor section, which looks like it could use an update, so please, ladies, add your solutions here and we'll try to get them posted (with your permission, of course):
http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#Shaving_under_our_armsOn the other hand, a lot of women have reported that they've been shaving their underarms with a straight razor for years and never nicked themselves, soooooooo......they use their razor along with a good lather, while watching carefully in a mirror. They keep the topical antibiotic handy and use it for scratches, nicks, or just "razor burn." Change to a new one frequently, and between uses sterilize it in your dishwasher (unless that grosses you out
.) Whew! Brilliant thought about trying it out first -- brava, Becky!!
BinneyEdited to add NatsFan and I were posting at the same time. You know what they say about great minds thinking along the same lines...
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Well today I 'graduated' to the full arm wrapping. In a week I had a 7% increase in the size of my arm. And I was doing the massage, wearing my sleeve, and wrapping my hand. Any suggestions on whether I can still or should exercise or not. I just want to walk. My LE therapist said to take it easy. I don't know what that means..
Thanks ladies!
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just wanted to pop in here. let you ladies know, im lurking, reading, but you're covering things so well,ive not felt the need to add to it.
im still doing the PT that covers LE and MS. been having more problems with the MS/legs than LE.. and im sooograteful!! am looking into Lymphedema Slaeeve Co today for the bilateral sleeve in black. i got a check from ins for soething, so i can finally order it! im looking forward to it. ill let you know how i do. im going LESS compression, as i find its better. learned that from you, Binney, and its' true for this gal... 3jays
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ummm nobody told me I shouldn't be using a razor. I too have very few hairs. Rads side two. lol The other arm which had nothing done to it maybe 8. I count my blessings because I don't use anything to shave with either.
I had a great day yesterday. My underarm felt smaller than it has since all this started. Maybe I should go to my moms more often.
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MelanieAnn--if you're bandaged, it's actually good to exercise a bit, as the muscle contracts against the bandage and pumps lymph. A bit of walking, especially with elbows bent should be okay--you can ask your therapist. Some give out exercises to do while bandaged.
The whole razor issue: so many women chafe with electric and it always seems like the better bet is either a trimmer or a good multi-bladed razor, done carefully.
Kira
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Hi 3jays--I wondered where you have been. Glad you are still with us--even if lurking. I love your animated pictures.
NatsFan and Binney--Thanks for the razor advice. I used to use Intuition razor. I never felt like it nicked. I may try it again--or get the Venus. Binney I read the stepup-speakout in entirity when I first learned about it but have forgotten so much of it. I need to keep referring back to it. I have read so much lately about rads, meds, LE I can't remember all of it.
Melanie-Ann--I have been wrapped for five weeks now. My therapist gave me exercises to do--Zuther's. She also said I could walk but did say to not overdo it. I do bend my elbows when I walk. She also approved "Healthy Steps" DVD.
Another question for you astute ladies--I have to have a filling replaced and a crown put on next month. I read somewhere (again I can't remember where) that it can cause LE flare and to talk to your dentist about an antibiotic. I talked to my dentist and he said there should be no problem as long as I do not have an immune disorder. The week after I have to have my teeth cleaned. Has anyone had a problem with dental work and LE? (I promise one day to quit asking so many questions and maybe start answering some. I am still at LE 101 and Kira and Binney are at the PhD level)!
Becky
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Becky, Technically LE doesn't require prophylactic antibiotics, but it can cause a transient burst of bacteria into the blood stream, so any symptoms afterward, treat them early.
The dentists follow the American Heart Association guidelines, and they got really "tough"--so a lot of people who used to get antibiotics no longer "qualify"--it's mostly if you have an artificial valve.
You should have antibiotics for emergencies at home, and if you don't, perhaps your dentist will write you a script.
(So, now I'm a PhD....)
Kira
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A PhD in LE?
Gaaaaaakkkkkk!MelanieAnn, hoping you'll see some real improvement with the wrapping. Are you learning to do it yourself as well? Keep us posted! Both Zuther's exercises and the Lebed are perfect for us Wrapped Wonders.
Kittydog, can you think of anything you did that brought about the reduction in swelling? More activity, or less? Dietary changes? Weather issues? I wrack my brain all the time trying to figure out how to help myself with this stupid stuff, and even after several years I'm still discovering things -- some new restrictions, but a lot of new freedoms too!
3Jays, always good to hear from you, and anxious to hear how the new sleeve works for you. Another light-compression off-the-shelf sleeve that works well for me is the Juzo dream sleeve -- comes in lots of colors.
Be well!
Binney0 -
Hi Gals,
I just wanted to check in to mention my diagnostic mammo today. The radiologist read it right away and said it looked good. The blood work was good too so I will stay positive about being NED. Even though I always try to be positive; it was a bit of a scare. I will see the surgeon on Wed to talk about the R MX. I think I am going to go through with it even though I will not be able to have the reconstruction now. (sad, I was so ready for it) I didn't find out all the facts yet but "someone" did not do the paperwork for PS with the insurance company! My PS is new to the area but I really like her and have faith in her abilities so I will stick with her. Because I have "poor peoples' insurance" not too many Drs want to work with me. The head of her group does not take my insurance but he does beautiful work...I have seen a few of the girls and spoke with them. Anyway, he will be in the OR with her whan I have my surgery so I get two for one. I guess this will give me more time to work out more of this contracture before the surgery.
I am tired tonight but wanted to say hello to Melanie_Ann. You found a great group of ladies here.
Sweet Dreams all...
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BeckySharp - Kira answered your question about LE & dental work ... good to know!
I'll chime in about reconstruction ... I have reconstructed breasts, both sides, silicone implants ... and my PS told me that if I had any dental work (not including regular cleanings) but root canals, crown work to call his office for preventative antibiotics ... not sure on all the reasons why ... but the bacterial that Kira mentioned ... can settle in the pocket around the implants and cause a nasty infection.
Just wanted to add that in case you have implants too!
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Benny I honestly have no clue. I sat in a recliner with my feet up. The only other thing was once I told mom I had to use the window unit, It was quite cold. lol Like most old homes it worked on one speed. Freezing or warm. I also had to climb a flight of stairs every night. Will see if any of that is related when I go back this summer for a week.
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In addition to perhaps taking antibiotics before dental work because of LE, if you are on zometa (zoledronic acid) for bone mets or for prevention, you should talk to your dentist and med. oncologist about prophylactic antibiotics. One of the serious side effects of zometa is jaw necrosis, and it is possible that taking antibiotics prior to dental work may lower the chances. KS
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Walking...I did read in Dr. Weiss book that we may want to walk with our arms up....I didn't quite understand. A high bend?
I am feeling a bit grrr these days...as it gets warm and humid I seem a bit quicker to swell. Would like to get my "real" garments asap.
I have another thought on the silverwave, but I will save it for that thread.
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Here is another thing, when my arm starts feeling warm due to the weather + sleeve my instinct is to take it off so I feel cooler. I know this is wrong, but I just feel like cooling down is the right thing to do.
I will admit I am getting a bit scared about the warm weather!
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cookiegal - I feel ya on the warm weather. I've noticed the increase in swelling already and I.am.not.looking.forward.to.it!
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Just jumping in here with a bit of trivia on the Lebed DVD that I just learned tonight at a LE face-to-face support group, where a real life Lebed-method instructor led us in exercises (great fun, BTW
!)So, okay, you know the guy on the video who sits in the back corner, wears leopard-print pants and a long "Cat-in-the-hat" scarf, and goofs up a lot on the exercises (I love it -- makes me feel competent by comparison!)? Turns out he is Sherry Lebed's brother, Dr. Marc Lebed, who is a surgeon.
Couldn't help it -- I burst out laughing when she told us that, so I couldn't wait to pass it along to all of you Lebed buffs who have commented in the past on his bizarre presence in the video. Now we know!
Okay, back to our regular programming...
Binney0 -
that's hilarious, binney! never would i have guessed that! when i first saw him i thought, 'well there's Dr. Seuss!" HA! And he's a real doctor ... that's pretty cool! thanks for sharing! 0
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Cookie and Dawne, I'm noticing the warm weather and easier swelling, and it's a grrrrr feeling.
Back in October, before I broke my hand, things were just so under control. Then yesterday at work, it was warm and I could feel my fingers getting pudgy, grrrr
And, after the cast came off, 6 months ago, I wrap early in the evening,
And it's not even hot out.
Cookie: when I got home from work last night: glove on: I walked the dog, and kept my elbows bent to my arms weren't dependent.
RE: the dental work--my husband is dentist and they work of the SBE (bacterial endocarditis) guidelines they're given, and believe me, LE is just not figured in. So, if any LE doctors think it's a good idea, I think most dentists would err on the side of caution.
Here are the guidelines from the AHA and they're to prevent bacterial endocarditis:
http://www.americanheart.org/presenter.jhtml?identifier=3047051
Here's the American Dental Association postion on dental work and artificial joints--generally don't need antibiotics, but can consider it
http://jada.ada.org/content/134/7/895.full
And, here's a great article on LymphNotes about LE and dental work: Kathleen Francis says no need for prophylactic antibiotics for routine dental work.
http://www.lymphnotes.com/article.php/id/236/
So, clear as mud, but personally, if you have any history of cellulitis or your LE is out of control, I'd say the risk of antibiotics is minimal.
Kira
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Binney, thanks for the inside dope on "James" in the Lebed DVD. I wondered what his lymphedema connection was. And why he wears that long scarf. For those among you who have tried the Lebed DVD and expressed irritation with the various characters, especially the chatty woman who constantly says things that can't quite be understood--my experience has been that if you do it long enough, you just might start to tune it out. I have. I keep trying other exercises (I tried the Yoga for the Rest of Us DVD mentioned by someone here) and always come back to the Lebed. It just makes me feel good. I don't have lymphedema but both my arms have been compromised by surgery, radiation, frozen shoulder. These exercises have truly restored my range of motion.
BTW, Kira, I have ordered Sherry Lebed's newest tape that you mentioned here, so will report back when I've tried it.
cookiegal, my PT told me I should walk with my arms bent at the elbow, kind of the way power walkers walk, so that my forearm is perpendicular to my upper arm and parallel to the ground. I've been doing this for almost five years now. My PT says this will keep blood from pooling in your hands as you walk. This is especially helpful on hot days. I walk a lot and sometimes find that holding my arms like that can be uncomfortable, but it feels better than just letting my hands swing at my sides and it's also been helpful for my posture, since with each step I bring my shoulders back a little. The other day, I walked for about four miles, holding my arms up most of the way, and my right shoulder started feeling rather achy. This happens to me from time to time, but when my PT measures she hasn't observed any problem. Still, it's one of the reasons I keep coming back to this forum (I'm high risk for lymphedema, having had a seroma that lasted for three years, cording, Mondor's, frozen shoulder, lymph nodes removed from both sides).
Barbara
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i just stumbled on this post and my heart goes out to all of you! i had this swelling on one occasion since my mastectomies a year ago. this past march while in hospital following DIEP surgery, i had numerous complications with the left flap and had a second surgery the day after the original one. in the OR the anesthesiologist tried to put an IV in my left arm (just the sentinel node had been removed from that side) and i resisted. he said the notion that i would have swelling was an old wives' tale and that they never ever saw this occur. i told him my general surgeon had told me never to have BP or IV on that arm and that i wanted to protect it just in case. again, he told me it would never happen. 9 days later while still in hospital all of a sudden my arm ballooned and was swollen and hard. the IV was no longer in it and had been taken out the night before. the wrapped it and after a couple of days it was okay again but i was very upset and worried about it. i can't imagine how it must be to have to live with this happening all the time and i can understand how upsetting it must be.
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Binney, if he is Dr Marc Lebed, why does she call him James? ("James is looking for those hot girls")
At least that's how I heard it.
I know that her two brothers are physicians and helped her with all of her programs.
I looked up her bio and her brothers are: Dr. Marc Lebed and Dr. Joel Lebed
Did I hear it wrong on the DVD?? Is she protecting his identity??
Why do I care?
Kira
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Kira, I wondered that too. She does call him James on the DVD, so, possibly to protect his identity. Which her graduate instructors then go out and announce to the world.
That's why it cracked me up. On the other hand, it does explain what he's doing there. She said he was Marc Lebed. Makes sense that if he's her brother he's a little nutty too. None of the other women there had ever heard of Lebed or done the exercises, so none of that registered with them.It was a fun evening. She handed out bottles of bubble soap, small beach balls, and colorful leis. Everybody really got into it, even those who were muttering at the beginning. A few women had their husbands with them, and even they got into it whole-heartedly. It's a hard thing to resist!
Cookie, on that business of holding your arms up, I can see where that's confusing. The other women have already discussed what to do while walking. But I just wanted to add that we do have to be careful never to hold them up without support to the point of fatigue. Whenever we need to elevate our arms they should be supported (on the back of the couch or car seat, on pillows, whatever) "Be gentle with your body," as the now famous Sherry Lebed says.
Be well!
Binney0 -
I ordered this video The Lebed Method, Focus on Healing Through Therapeutic Exercise and Movement is this the one you are talking about?0
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maybe his name is marc james or james marc? so funny...........
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Hi Binney and Kira
Just wanted to check in here again. I had found lymphnodes ranging from2mm to 6mm under both my arms and asked if this was possible a possible LE issue. My LE/ PT said get thee checked and no it wasnt..... and Binney you had mentioned the same.
Sooooo i saw surgical onc yesterday and she found the nodes and wont be concerned until they hit 1cm... i get rechecked in 3 months and will keep and eye on them myself as well. She mentioned the risk of microinvasion even tho I am dcis grade 3.
Is there any relation to increased activity and LN size? I have been doing all my stretches/ taking breaks with housework ( which I still can not kick any butt! ) doing my LE/PT exercises...raising my arms for breaks and doing the squeeze ball... and light weigh lifting/ deep breathing/ watching salt/ drinking water.... My arm measurments are all stable... the best my arms have looked since surgery.... not like jello sausages.
would you advise compression sleeve with this going on? I ususaly wear it for housework and the small amount of yard raking I might do 1x/ week. I had a brain fart and forgot to ask this?
Hope you are all feeling ok and having no swells.
i keep forgetting the spell checker!
call me for brownies!
Peace to all
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Barbara, be prepared for a shocker when you play the Healthy Steps Class #1 dvd! Talk about changed appearances.................
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