GRRRRRRRRR I HATE LE..........

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited July 2012

    Nibbana- In addition to Foley's suggestions, raise you arm up straight in the air high and fist pump 25-30 times slowly. This drives the fluid down. Do this a few times a day but don't tire your arm out.

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited July 2012

    Nibana, I see you swelled when you walked. Next time you walk don't dangle your arms down. Hold your arms like you are holding  ski poles. ( or like a race walker) In fact, I sometimes use Nordic walking poles as they support my arm and keep it bent at an nice angle. Your arm may respond much better to the walk if you try this.

     A lot of this sucky LE is trial and error but we eventually find answers, so stick with us.Smile

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  • nibbana
    nibbana Member Posts: 464
    edited July 2012

    hugs4u,

    I use trekking poles whenever I hike. Plus I had on long sleeves and a wide brim hat for protection from sun and bugs. I guess this is trial and error. If my arm doesn't like hiking, that's too bad, cause it's going hiking anyway. I'll just hike in my garments when they come.

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited July 2012
    Nibbana.  Smart girl on the poles thingy! You sound like you are doing the right things and I enjoy your " I'm gonna do what I wanna do" attitude!  You remind me of Nordy, She goes biking and skiing and whatever and then doctors up her LE arm after. She has LE under control and makes sure it doesn't spoil her life! I am not brave enough to do everything I use to. A flare scares me to death. I admire you! Smile
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  • carol57
    carol57 Member Posts: 3,567
    edited July 2012

    Rockym, I owe you a review of the Allegro combined sleeve/gauntlet, which was waiting for me when I returned from vacation on Saturday.  I'm very pleased with it! I bought a medium in 20-30mmHg compression.

    If you want to compare it to a sleeve you are using, it is exactly 19" from sleeve top to the bottom of the gauntlet. When laid flat, the band at the top is 4.5" wide (so 9" circumference) and then flares slightly, to 5" wide, for the four inches of length below the band. The width is greater at most points than both my medium Jobst off-the-shelf sleeve and a lymphedivas sleeve, but the fabric is quite different, which may explain why I sense that the compression is similar to the other sleeves.  I cannot tell the difference in compression, if there is any.  I am 5'3" tall, so not very long arms, and I had read that the Allegro might be extra long, but that does not seem to be the case with the sleeve/gauntlet combo. 

    For the money -- $27--I'm glad I tried it, and I'll be keeping it to see how it continues to work and to hold up for me.  Brightlife's return policy is so good --they take it back even if you've worn it for a while--it's a pretty low risk to order one and see what you think.

    Carol

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  • Estel
    Estel Member Posts: 3,353
    edited July 2012

    Kira - Thank you.  

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited July 2012

    GMA there are no guarentees...but it is pretty common to have fibrotic spots by your scar

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  • Teka
    Teka Member Posts: 10,052
    edited August 2012

    GmaFoley,

    Good Luck!!

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited July 2012

    Teka - I am going crazy this morning - I am pretty sure its nothing but the waiting to get that confirmed is soooooo hard... Really having trouble concentrating on work..  

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  • sandcastle
    sandcastle Member Posts: 587
    edited July 2012

    I just wanted to tell you girls......I am so Pleased with Lymphadiva's that I ordered the sleeve today....a Beautiful Design.....I did well with the gauntlet....I am most happy....Liz

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited July 2012

    Liz, that is awesome to hear. now that I know my size I might try ordering something but right now I am doing ok with the two I have..  Its kinda weird - the beige colored ones match my skin so well I haven't gotten any comments on what it is yet...

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  • Estel
    Estel Member Posts: 3,353
    edited July 2012

    Got re-wrapped today by a new therapist.  I then went to the gym.  It was my first time ever doing cardio with the wrap on.  I still have it on ... which makes a couple of hours which is a whole lot longer than the first time.  I'm not nauseous this time either.  I wrapped myself for the first time last night.  I'm thankful I was in a good mood or I would have thrown bandages like I've heard some of my other sisters doing.  Wink  It took three goes to get something resembling what it was supposed to look like on my fingers.  My arm ... not so much.  Undecided  I think I was so exhausted and so overwhelmed from the fingers and hand ... it was more than I could take.  lol.  I can see, though, that eventually I'm going to get this.  And I think the wrapping is really going to help me.  

    Thank you all for your support. 

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited July 2012

    If I have breast LE, and they decided to do a biopsy... do I need to do anything to keep the LE at bay?

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  • nibbana
    nibbana Member Posts: 464
    edited July 2012

    My arm looks like the Hindenburg airship! It's almost like those grotesque pictures we've all Googled. Walking around with semi-treated LE REALLY sucks! MLD, fist-pumping is not working.

    I need my garments, I need my LET, I need to vent!!!!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited July 2012

    Dawne-Hope, I'm just thrilled with your news!Cool What a lot of trial and error--major trial, lots of errors--to finally get some help. Hope it just keeps on getting better! And yeah, you'll get it down, just takes practice.Smile

    Gma, can't wait til you have confirmation that all's well. In the event of a biopsy, ask the doctor about a possible prophylactic antibiotic to ward off any chance of infection. Otherwise be aware and get help immediately if you develop any problems--or even any questions about a possible problem. (See the LE Emergencies page at StepUp-SpeakOut for what to watch for). Looking forward to good news!

    Nibbana, when can you see your therapist? Give her a call today, yes? Bummer!Yell

    Be well!
    Binney

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  • kira66715
    kira66715 Member Posts: 4,681
    edited July 2012

    Dawne-Hope, I think it took hours the first time I wrapped and I just couldn't get it right...Now it literally takes 10 minutes. Practice sure makes a difference.

    I had wraps that were too tight make me nauseated. Bad sign. Glad this is working out.

    Kira

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited July 2012

    GMA-

    I have lympho in my boobie and back area, Binney advised me to take antibiotics before my recent biopsy but my surgeon and the doc at the biopsy center both said it was not needed so I went in cold (it was an ultra sound guided biopsy)

    have to say that I have been having some pain in my wrist arm since the biopsy, I only have swelling in the actual boobie and not in the arm

    not sure if antibiotics or maybe some thing else would have helped

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012

    Ultrasound tomorrow at 8:45 - I hate when the surgeon says he will call me with the results and if it is worrysome he will just take it out to make sure.... The last time he said that, I ended up with 2 surgeries.

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  • Teka
    Teka Member Posts: 10,052
    edited August 2012

    I've grown to hate these three words.

    mammogram 

    ultrasound

    biopsy

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  • kira66715
    kira66715 Member Posts: 4,681
    edited August 2012

    GMA, your surgeon is being cautious and doing all the right stuff. So hard to be waiting and worrying.

    Hopes for the "all clear" this morning.

    Kira

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    Thinking of you this morning, Gma.

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012
    Ultrasound done - RO came in, looked and my whole scar in the ultrasound, went back to the pea sized lump and said he has no clue what it is, it could be scar tissue but he has seen cancer in that form too. He is going to suggest an MRI.Undecided $$$$$$ No insurance at this point to speak of - used it up on the LE therapy....
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  • kira66715
    kira66715 Member Posts: 4,681
    edited August 2012

    GMAFoley, I've seen and heard of a lot of women who are covered under their state's insurance for breast cancer treatment, related to that 1998 law. I know they say "mastectomy", but a lumpectomy is a "segmental mastectomy" and qualifies.

    http://www.dol.gov/ebsa/publications/whcra.html

    Just being devil's advocate, why the MRI if the surgeon just wants to take it out?

    And I'm so sorry they didn't end the worry for you this morning.

    Hugs

    Kira

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012

    The RO at the center said "HE" couldn't do a biopsy because it didn't look totally like "my type of cancer". But I called the surgeon's office and gave him a heads-up, he can see the films before the report because they are linked together.  He said he would take it out if it was "worrysome" - (his pet word). Now waiting for the surgeon to call me back Undecided

    Edit:  Thank you ladies - please keep opinions coming! I need help deciding what to do. 

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  • Teka
    Teka Member Posts: 10,052
    edited August 2012

    MRI guided biopsy?

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012

    Teka I have no clue - I do have the ultrasound pics from my cancer and today - its is more like a pea but it is not round its irregular whereas my cancer was more elongated and irregular... so I give the RO kudos for at least telling me the truth - that he has no clue.. just waiting for the surgeon to call me back  - I know, I know - I shouldn't look at the pictures, but being and osteologist/archaeologist in my other profession, I am always interested in what things look like.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2012

    Gma, an osteologist! You're not joking, right? How fascinating is that!Surprised A mystery solver. Good for you for going for something so "out there" and interesting!Cool

    Hang in there--you're going to have answers, and they'll be quick. I'm looking forward with you to only good news. (Whew!)

    Big hugs,
    Binney

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012

    Yes, Binney, I'm not fooling but my osteology days are over - All the bone in Oregon is either under Mt. Mazama ash (Crater Lake was Mt Mazama) or the stuff above is off limits because it is Native American and they use their own people to identify it. And now with the start of LE I don't think I should be in the sun, in the middle of pastures digging 80cm shovel probes, 30 meters apart with killer bees and snakes running around.. :(  - To get to the fun part, they make you do the labor too..

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited August 2012

    wow, I made a trip form NJ to Oregon years ago to visit a pal and also to see Crater Lake

    still have the photos

    wanted to walk around the lake as it was July....snow still blocked the path but I totally recomend the trip

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited August 2012

    Proudtospin: The actual ash spread miles away from Crater Lake - I live a long way from there in Roseburg and if you take the route to Crater Lake - you can see the layer of ash in the side of the mountains.

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