GRRRRRRRRR I HATE LE..........
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Sorry about Linda n3 too. She was a good contributor to the posts. Will miss her for sure.
Dune, I am so glad you are careful will the Ace as this is not standard therapy supplies for LE. I think the short stretch is the way to go due the way the bandage is made. I know if you move your limb, the short stretch helps move the fluid due to it weave, limited stretch or something like that. Anyone know the whole story on how it exactly works?
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Short stretch is designed to apply pressure when the muscles are engaged, and reduce the pressure when they are not. Ace bandages apply constant pressure. Lymph moves when the muscles press against the lymphatic vessels, and the short-stretch bandages provide a firm surface against which the muscles can press, maximizing the muscles' work to nudge the lymph along. I suppose that by releasing some pressure when the muscles are at rest, the short-stretch bandages encourage a kind of pumping action. And that, ladies, is my best memory of reading how the bandages work. I am wide, wide open to correction if anyone sees that I've misstated anything here. We need to get it right--isn't it Kira whose signature is 'knowledge is power' --and understanding how the bandages work might reduce the considerable frustration at needing to use them in such a particular and tedious way, i.e. wrapping.
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I am only doing this because I don't see the LE therapist until Wed. Then I will get wrapped. I'll also get a Rx for a sleeve and gauntlet. I'm so lucky. My insurance will cover it. I'm going to get the lacy looking kind from lymphodiva.
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Dunesleeper - so glad you are getting help with that. I hope the lymphedivas work for you. My arms are too short to wear them..
I ordered my first custom sleeve for the left arm last week. With the OTC sleeve, my left arm starts hurting in the forearm within 2 hours. The forearm is too loose.
.. I have a 1000 mile driving trip this week to go to my Dear MIL Memorial Service. It is where they just had the earthquake and going through the hottest areas in CA to get there. About an 8 hour drive each way.. We have decided to take the car with the good air conditioning but the seats aren't as comfortable as the other car. Hoping I don't have a flare-up. Prayers would be appreciated.Just another question if you all don't mind.. I am going in for a consult for a reduction.. Thought it wouldn't be as intense as a full Mx. I still can't wear a bra - the band flares the nerve pain up. Even after the acupuncture, wearing anything that touches that area, the pain comes back. I have been wearing compression tank tops but can't really do any exercise in those because of the large topside. Hence the idea of the reduction. Surprise to me, my original surgeon, that poo poo'd any idea of mastectomy, actually gave me a referral to 2 Plastic Surgeons ..They are so busy though, my consult isn't until Nov. 4th.. I am on a wait list. All that being said. Am I asking for trouble with the LE? Or do you think I can do this?
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I want to get my dog ears removed. Was about to do that when I got diagnosed with LE. So i put the surgery on hold. The PS's nurse says that they manage patients with LE all the time. My LE therapist says it can be managed. MLD before and after. Wearing the appropriate garments, etc. I would speak frankly to the PS's and to your LE therapist if you have one, and see what they say. I'm getting HX next month, so have put off the dog ear removal yet again,, but hoping to do it in the spring.
Best of luck with your drive. Probably better to take the car with the good AC in the heat. Small pillow for your back? A rolled up towel for back support? Frequent breaks to walk around.
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Gma and Glennie, here are some guidelines for smooth sailing through surgery in an area with LE:
http://www.stepup-speakout.org/Emergencies_and_Med...
Gma, do stop often to walk around and exercise, stay REALLY well hydrated, avoid salty snacks, and do some deep abdominal breathing at intervals. When you're riding (not driving) elevate your arm (take a pillow along for that purpose). Safe travels!
Binney0 -
Prayers for you Esther. You betcha. Let us know how it is going.
About how long does it take to get your sleeve after ordering? I hope I can wear the lymphadiva one too. If we have to wear one, it must be better to wear one that you like. Of course, I will probably grow to hate it in no time. Fortunately, we are going to be heading into Autumn soon.
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Dunesleeper, it's normal when doing LE therapy to be wrapped for a period of time to reduce the swelling BEFORE you are fitted for a sleeve and gauntlet or glove. The wrapping reduces swelling, the garments only keep it from re-accumulating. Make sense?
Let us know how it goes! Hugs,
Binney0 -
Nooooooo. HUGE whine here! I don't like the wrapping Sam I am. Lol! Well, hopefully the short stretch will feel better. This is itching me so bad. Whine whine whine some more. I think I should have some beer with that whine. Beer and pain meds. Do you think it will actually get rid of the pain? Bone mets hurt man! Lordy!!!!
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I hear you, Sam-I-am!
I will say for LE wrapping that there are soft layers underneath that help keep the itching away and generally soften the whole effect. And it supports the arm tissue wonderfully, which does, in fact add to comfort for most of us. I just wanted to warn you that you may not be moving straight into sleeve-and-glove mode. In case you need it, here's info on how to cope while wrapped:
http://www.stepup-speakout.org/How_You_Can_Cope_wi...
Please know you're not alone!
Gentle hugs,
Binney0 -
Thanks Binney. I will check that out.
I just found out: biopsy tomorrow. PET was today. I guess I'm going to get the information about just where I stand. I've been wanting this for weeks, maybe a month. Why do I suddenly feel sick?
Just a rhetorical question.
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Binney, you are a wonderful source of information!! Thank you for all your help.dune: ((hugs)) in the pocket for tomorrow. Keep us posted. My biopsy is next Weds,,, stressing already.
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Dunesleeper, prayers surrounding you,
Binney0 -
Oh Glennie! Best of luck to you! I am totally taking some xanax tomorrow. I don't normally take it during the day, but I don't think I can do this without it.
Thanks Binney.
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definitely will be thinking positive thoughts and in your pocket
you made the best decisions for you at the time based on your info, stay strong..
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I'm in your pocket - Prayers are coming both your ways - Dune. and Glennie
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i like that little cutie. can sit in my pocket anytime.dune: I'll be taking Valium. totally support you taking Xanax during the day.
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I think I'm ok now. I guess I'll take it with me tomorrow, but I think I am going to be ok. I hope you will be too Glennie. And I haven't forgotten about prayers for Gma for a safe, flare-free trip.
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I just want to send hugs all around with wishes for best possible outcomes--there's a lot going on with our forum members here! What a great, great grounding spot this is--a wonderful place to look for and receive the support we need, when we need it, by people who totally relate. The conversation on this page is all of that and more.
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dune, praying for you tonight! Glennie, you, too. You are not alone! GMA, I hope things stay stable for you during your trip.
Life takes so much courage sometimes. I'm finally seeing a therapist certified in medical issues, like cancer, to talk it out. I think it'll be good.
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yeap, we all need each other so lifting out to hold all up. Can not imagine getting through all this crud wirthout support
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Jeannie: "Life takes so much courage sometimes." Wow--yes! Thanks for reminding us to take a moment now and then to pat ourselves on the back for the courage we show on a daily basis. Hugs (and chocolate!) all around!
Binney0 -
Jeannie: good on you for seeing a therapist. It's good to talk it out.Thanks for all the hugs and chocolates, everyone!
I love our support group.
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I am properly wrapped and sweating like a cold drink on a hot day!
Biopsy done. Waiting for results.
PET results:
PET results show no metastasis to lungs, liver, or brain. Good news.
Metastasis to lymph nodes both sides of neck, right axilla, subcutaneous pectoralis, direct invasion of right pectoralis minor.
Numerous skeletal metasteses including the ramus of the mandible on right side, the spine of the left scapula, mid-left scapular, multiple bilateral ribs, involving the large segment of the left ilium posteriorly by the posterior iliac crests, the right sacrum in its midportion, the right anterior superior iliac crests, the distal right ilium. A subtle metastatic lesion in right ischium.
Intramedullary lesions without bony destruction seen in proximal right femur and posterior cortex of proximal left femur also without associated bony destruction.
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Dunesleeper, you've had one heck of a day. Did you like your therapist? Anyway, wrapped is good. Get in to a cool area of your home if you can. Get a fan on yourself. Sip ice water. When do you go back to the therapist? Keep an eye out for discolouration of fingertips (too tightly wrapped at some point) and if you simply cannot stand it........take them off. I think the first time I lasted for about 6 hours. You and your therapist will learn what works for you. Not all of us can be wrapped according to 'the book'.
As for the PET..........good news on the first part. Wow, it's so much to take in. I have no experience in that regard so all I can offer is Binney's secret salve...........chocolate.
Hugs galore.
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Dunesleeper, there aren't words. Okay, prayers for a full-on attack on all those nasty buggers, and follow-up scans further down the road that show great improvement on all fronts.
As for the wrapping, welcome to this strange, bulky world--may your arm respond with meekness! Hang in there--you can do this! Chocolate helps…
Gentle hugs,
Binney0 -
Wow, Dunesleeper, I repeat my words that life takes so much courage! I hope your future treatment keeps those evil buggers at bay for a long time. You can do this because you have this great group with you. You're not alone.
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Dune: YAY for first part of PET scan results. Crap on a chapstick for the 2nd part.Virtual hugs and chocolate.
How are you holding up with the wrapping? I'm sure it is hot. Drink cold water and sit in front of a fan???
Hanging with you for the biopsy results.
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The wrapping is coming undone. Fortunately, I go back to see her tomorrow. The stopgap measure with the ace bandages helped a lot, so hopefully it won't take too long to get permission for a sleeve.
Crap on a chapstick. That's funny!!!! So yeah,I need to work on, well something. I completely lost my thought. Lots of pain meds. Falling asleep at the keyboard'
Sweet dreams.
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Sweet dreams, dunesleeper, and restful sleep at that. You'll be needing all the energy you can muster--and I'm sending you some positive energy now to help in the effort! Holding many a good thought for you.
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