GRRRRRRRRR I HATE LE..........
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Gma, isn't it wonderful to have a feeling great morning. Nice to get some relief.0 -
So happy for you, GMA! You have suffered so much. Enjoy!
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Yes it is, just wish it lasted - soon as I get vertical things start hurting and swelling again. At least I had a few hours this morning pain free. Gravity sucks..
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Hello all I have recently been diagnosed with LE and it is on one side. Just wanted to know if this is normal. It is on my left side where the lymphnodes were removed. My left side of the face is so swollen that my eye is bloodshot and I have a migraine headache. My oncolgist said she has never seen it in the face and only on one side. Just wanted to know if anyone else has had the face swelling. My appt isn't until next Tuesday with a LE specialist. Not sure I can wait that long. I feel like I am gonna explode. Is there any medication that can be taken to reduce the swelling. I think I am gonna have to call someone. Plus i have a sinus infection and that could be causing the swelling I am just at a loss as to what to do since there is so little people who know about LE. I was treated for a month by my primary care Dr. With no relief. At least I know what it is now. Just looking for some relief. I am going to go on youtube and see if I can learn how to do some of the massages, but i dont want to do it wrong and cause more issues. Thanks for letting me rant! When will this nightmare end!!
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togetherness, I'm so sorry that you're having to put up with these symptoms, and it sure sounds like you're having a pretty tough go of it. I'm sure not an expert on LE, but it seems unlikely to me that facial swelling is related to your arm LE. Unless you had lymph nodes removed from your neck, that would be an unusual way for LE to progress from the axilla, which I'm guessing is the site where you had nodes removed. Now, LE is one weird and unpredictable condition, so I suppose anything is possible, but it seems more likely that your face swelling is from your sinus infection. Are you taking antibiotics for that? I've had sinus infections before, and it is misery, that's for sure.
While you wait for your appointment with the LE therapist, there are some steps you can take to help with your arm LE symptoms. Here's a link to a wonderful website's information about that: http://stepup-speakout.org/How_You_Can_Cope_with_...
And do explore the stepup site, because it's full of helpful--and most important, accurate--information about LE and strategies to deal with it.
Best of luck figuring this out stat--and hugs, too. I'm sure others will drop by to share their knowledge and experience.
Carol
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Togetherness, I answered another post of yours on a different board, but I'll copy it here too in case you're not up for looking all over for posts.
Togetherness, did your doctor do an ultrasound to be sure you're not dealing with blood clots? This is not a typical presentation of lymphedema, and I doubt a therapist will be willing to touch you without further diagnostics to figure out what's going on. Have you been on a wide-spectrum antibiotic for the possible sinus infection? I sure wouldn't recommend trying massage until you know what's going on, because if there are blood clots involved lymph massage is contraindicated. If it's getting worse, by all means do go to the ER and insist on some answers.
Please let us know what you discover. Gentle hugs,
Binney0 -
Binney no an ultrasound was not done. I have even dealing with this for a month. I went to my primary doctor when the swelling was in my hand. She gave me anti-inflammatory meds and told me to come back if I wasn't better in two weeks. Well two weeks the swelling had moved up my arm. Went back and she gave me steroids and another anti inflammatory and antibiotics for the sinus infection. Still no better went to my oncologist and she diagnosed me with the lymphodema. She saw that it was in my face but didn't suggest an ultrasound. Now today I have the bloodshot eye and migraine. I just need someone to address this and get to the bottom of it. My oncologist asked who my surgeon was and I told her and she said oh he doesnt believe that there is such a thing as lymphodema. I am like really. Then what would he diagnose me with? She didn't have an answer. You can visible see that something is going on. I am just frustrated!!
Carol I had no lymphnodes removed from my neck just under my arm on the left side which is the breast cancer side. It could be related to the sinus infection for the face swelling, but I think the hand and arm is LE. I am still on z pack for the sinus infection. Just want answers and get a game plan. Like I did with the cancer. Thanks for the feedback.
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I went to my primary doctor when the swelling was in my hand. She gave me anti-inflammatory meds and told me to come back if I wasn't better in two weeks. Well two weeks the swelling had moved up my arm
Togetherness
Unfortumnately, this DOES sound like it could be LE. I know your appt., seems far away aqnd that is a torture, but in ' real time' it's actually pretty close for LE eval.!
Having said that, that does not soothe your pain. PERSONLLY, I too am in doubt about the face being LE related. It *could* be a severe sinus issue with that headcahe. What you are calling a migraine could potentially be a severe sinus headche and more. Not to scare you, but I might go to the ER and insist on a CT scan or US for the head/face if it doesnt let up. THAT I would not wait for .
Please let us know/ we do care . ...sure hope it resolves from your z pk. If it is a sinus infection, that's possible.0 -
Purple thanks for your input. The face was worse this morning and I called my oncologist and went in and she immediately sent me for an MRI of the brain. It was suppose to be without contrast and then she pulled me out after thirty minutes and said we are gonna give you contrast. I said I was not suppose to have contrast she said we called your oncologist and she wants a scan with contrast as well. So obviously they saw something.... Ugh and at the end she was persistsnt thst i followup asap for the results. I have an appointment monday if i dont get a call sooner from them. So needless to say I am very concerned. I had my blood test results in April and everything was good. My last chemo was in October. Could something develop that quick. They thought it could be paralysis or bells palsy. Sending me to a neurologist for those two concerns. I just want an answer the waiting is the worst and to have to wait over the weekend...... Ugh Still keeping my appt for the lymphodema specialist cause I think that is what is wrong with my hand, wrist, arm. Please keep me in your prayers as I am worried!!
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Togetherness, I have nothing to add in the way of information that might be of help to you but just so you know, I am thinking of you. I'm sure this is very scary.
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Just to add, I think you are right about your hand, wrist and arm. And it's good you'll be keeping the LE appt.
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togetherness, sounds like you are on top of things now with calls to docs, dang if it does not take longer than we all want but do try to stay calm, do a picnic this weekend and stay busy!
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Aw, Togetherness, waiting for test results is the lowest of low moments. Hoping you hear something soon, and that the news is only good. Definitely will be keeping you in my prayers, especially for some moments of joy in each day as you wait. Be WELL!
Binney0 -
Togetherness, keeping you in my thoughts and prayers, hoping for good news.
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Togetherness, you are in my prayers.
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Togetherness thinking of you and hoping for better news Monday.
I came to ask if anybody has had itching when they are swollen. My arm is a little swollen at the top of the arm and underneath. It has itched like crazy the last three days. No sign of bug bite, and it is not red or warm. My only thoughts is the fluid is hitting a nerve. I am very numb in that area. I have my too big sleeve on today and it is helping. Any other thoughts? Other than can you tell me where I hid my old sleeve. lol I found all of the legs ones but not one old sleeve.
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KittyDog, keep watching for redness and--well, you know the drill.
(Whatever happened to the old emoticons--they were much more expressive and they actually fit on the lines…grrrrrr!)
I have some Eucerin anti-itch lotion that helps when I get the itchies. Doesn't happen very often, fortunately, but it sure can drive you nuts. Hope all's better soon!
Hugs,
Binney0 -
Yah, I hate these emoticons too. I use to use them all the time. I don't even know what half of them mean now. The one smiling with the teeth looks like he is bearing them instead of grinning
or maybe its embarassment? What exactly is it?.... so I usually use the wink now.0 -
Is that a wink? I thought it was a panting dog. No, actually I used it in the post to Kitty to try to say "Are we sick of this drill yet?!!" But of course it doesn't really convey that. Drunk, maybe? Somebody just bopped it's little emoticon head?
The toothy grin just looks sinister.
Heh, heh! Better watch out!And what is this one?
It is your teenage kid who has once again tuned you out. This one's a really scared dog:
Or maybe a bear? A hamster? In my humble opinion there's very little call for a scared hamster on a breast cancer discussion board, so what is it doing here? Binney, baffled
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Speaking of itchies, I am allergic to the bands on the top of the sleeves, even Lymphedivas non-latex, non-silicone ones. Any suggestions on how I can keep them up without tugging on them all day? (I have some without bands now). It's frustrating and a grrrrrrrr. Of course, my cancer/rads arm gets the worse rash.
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Have you tried the Juzo glue yet? It works great but I do break out if I use it to often. Usually for my legs.
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Thanks Benny. I told my husband tonight, I give it till Monday then I am going to have it looked at if it's still driving me nuts. I was outside all last weekend with a Girl Scout cabin camping trip. I didn't even get sunburned this time...well my head did but I wasn't greasing down my thin hair. Next time I wear a hat. Stayed in the pool with the kids as much as I could stand it. It was a little cold for it to be June.
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I haven't heard of Juzo glue, thanks.
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Togetherness
RE: I have an appointment monday if i dont get a call sooner from them. So needless to say I am very concerned.
Waiting is the WORST!!!!
My DH went to MGH the other day for ongoing issue and they told him to come back next FRI for CT MRI and PET (i=ugh) and then they will give him results the following WED! All this after 12 mos of symptoms and 8 mos of essentially being ignored or led down the wrong path by drs here in Spfld. I TRULY know how you feel.I am currenrly waiting for an appt in AUG. hoping to DX soemthing thet no one here can seem to understand. It's maddening and they have scared the heck out of me with their tests.
BEST thing I have learned (and also for sure, the HARDEST) is to try hard not to jump to any conclusions. ( Sure wish I had a nickel for every time a nurse or MRI tech could not give me results and I tried to " read their faces") It really could be that your onc. dr. wants to be careful (good doc!) and ordered the gad just to be sure. Lord knows you could haev an innocent pineal cyst on the brain, for example ( normal variant) that they saw and wanted to 'illuminate' because of your symptoms. You just don't know yet.Alll you can do right now is know we are pulling for you, some are praying for you - we are with you in spirit . Do your very best to stay as calm as you can. Do let us know ... as we are waiting too!
You are on the right track, my dear.Take Care
Laurie
Kitty
Hope all is well .... try calming cream./ aveeno or eucerin and pls let us know.
Laurie
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togetherness, wherever you are, i am glad that you found binney and everyone here. they are GREAT, aren't they? told ya! i can remove where you first showed up from my fave's, because i expect you will be coming here to this thread for follow up. i hope everything is alright with you, please let us all know. i guess i am concerned because you haven't been here for a few days. everything all right? so sorry for your trouble, sweetie.
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Togetherness, prayers for strength for today's visit, and hoping to hear from you soon.
Warm hugs,
Binney0 -
Kittydog, what news?
Binney0 -
Want to share my good news and say thank you all for thinking of me. The brain MRI came back clear. They were being extra thorough since having my breast cancer diagnosis. They have diagnosed me with Bells Palsy. They feel it has been caught soon enough and the paralysis and swelling I am having in the face will correct itself with physical therapy. I am so relieved! So I go tomorrow to the specialist for lymphodema and see if she will be able to address the Bells Palsy as well. I hope so so I don't have to go to two different people. So happy!! Thanks again for your concern!
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Togetherness, glad you have a diagnosis and can get to the job of dealing with it. I always feel better when I am told to do PT for problems as it seems more controllable to me....good luck
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Togetherness, so glad to hear it! Sorry for the looooong weekend wait, but what a good thing it is to know you're now on your way to getting everything back into control. Whew!
Let us know how the LE therapist visit goes. Onward!
Binney0
