Fill Out Your Profile to share more about you. Learn more...
Webinar: Corrective Breast Reconstruction: Getting the Results You Want Join us July 9, 2024 at 6pm ET. Register here.

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

Options
12357332

Comments

  • o2bhealthy
    o2bhealthy Member Posts: 1,089
    edited October 2010
    Options

    YEA FAITH!!!!!!!  Great news!

  • KittyDog
    KittyDog Member Posts: 656
    edited October 2010
    Options

    great news

  • lmc1970
    lmc1970 Member Posts: 73
    edited October 2010
    Options

    Awesome news Faith! So happy fo you!!!

  • Estepp
    Estepp Member Posts: 2,966
    edited October 2010
    Options

    well something good .......... FAITH.... Wonderful!

    Anyone else have PAIN today with LE. my back.. shoulder.. arm...AND for the first time... my hand hurts and is pitting. I suppose I need a gauntlet ( sp),,, I don't even know how to spell it..

  • Firni
    Firni Member Posts: 521
    edited October 2010
    Options

    Yup.  Did some gardening yesterday (pulling dead stuff out) and paid for it last night (no sleep) and today with that damn heavy limb and ache.  massage, elevate, compress. Bleck

  • o2bhealthy
    o2bhealthy Member Posts: 1,089
    edited October 2010
    Options

    I didn't do anything unusual today and yet I have had more pain and discomfort too! Must be something in the air...

  • lmc1970
    lmc1970 Member Posts: 73
    edited October 2010
    Options

    I keep getting sharp pains on the inside of my arm (on top of the normal weird burning sensations)....not sure if that is from LE or from surgery...or both! So just relaxing and keeping my arm elevated as much as possible...such a waste of a beautiful day!

  • kcshreve
    kcshreve Member Posts: 349
    edited October 2010
    Options

    My LE shows up as a burning sensation in the areas I swell.  I'm sure those areas are connected to my frustration tolerance section of my brain, because when that's increasing, my tolerance level goes way, way down.  My weight is up again, and I suspect it's fluid I'm holding.  Seems to make a difference of a 3 pound swing for me.

  • wherria
    wherria Member Posts: 194
    edited October 2010
    Options

    kcshreve: you brought up weight, and that was something I wanted to ask you ladies about.  I'm getting ready for my 5th out of 6 chemo tx's and my weight has gone up by about 15 pound since I stated the chemo, but I can't tell how much of it is water retention and how much is real weight.  How much do you all find that your weight is affected by your LE? And how much do you find your LE is affected by your weight?  I know the swelling in my arm,chest, and back affect my weight.  I'm just not sure how much. Thanks

  • brazos58
    brazos58 Member Posts: 109
    edited August 2013
    Options

    Yey for you Faith!

    Finally have found my way here and read all the posts. I had a BMX/ 1 prophy on 6/10.  No nodes. Developed AWS on my Cancer side ( does not exist according to BS... and Will go away on its own...) I asked for PT/LE....finished 6 weeks and am on standby at the moment. I had alot of strength building exercise for shoulder/ back, scar release, and myofascial release for the cording in my right arm.  I just was at the fitter an have a sleeve/ guantlet.... and am waiting for a jovi - pak for chest swelling.I am not sure I might have truncal LE.... there is still swelling vs fat there since sx..... I am AT RISK for LE.

    My PT/ LE tells me to wear the sleeve Absolute for flying. And for heavy activitys as vacuuming, riding the tractor or washing my car ( which I dont even think I will get to till next year....)  I am advised to break down all repetive activities for 5 minutes and take a break....how much further can we break up our lives.... and how many more things do we have to give up?

    I am having a hard time with wrapping my head around all these restrictions let alone reading about what you all have to deal with.

    I do notice my arms swell up 1 cm if I do yard work ( I love yard work....) or vacuum.  And I have random burning in my right arm and an achy feeling....the veins in my right hand are more engorged than the left.

    Can you toss any thots my way as far as what to do after your LE/PT closes your chart? and advises you to contact them for any problems?  Is that protocol?

    I am not sure what a FLARE is or what causes it.

    I am missing hauling ass. I was gutting a 500sq foot room last year at this time.... I miss my crowbar and hammer. No packing up Roadie Coolers for Concerts. I just look at these Fall leaves and could cry. I can not take care of my house.... nor do I have a handle on it.

    I remain very disheartened at how BS dismissed my AWS, just said it was "Veins" and made very light of it. It was not even mentioned as a post op complication. It is not even acknowledged!

    Can I hand out with you all in this thread ? or is there another one for at Riskers?

    I only bake box mix brownies....like choc frosting on them....

    Sending you all Strength, and the answer to what hidden gift this suffering will bring.

    Peace

  • o2bhealthy
    o2bhealthy Member Posts: 1,089
    edited October 2010
    Options
    ((((Brazos))))  It sounds like you have gone past the 'at risk' and have already joined our swell club...Binney, Kira or one of the other more knowledgeable ladies will be along with advise but just wanted to let you know that you and your brownies are welcome to join us Laughing
  • kira
    kira Member Posts: 659
    edited August 2013
    Options

    Brazos, from what you describe, you have lymphedema--you're not just at risk. If your arm swells 1 cm with activity and then spontaneously resolves--it's still stage 1.

    I would be very surprized if anyone got a jovipak for "at risk": JoAnn Rovig  (owner and creator of jovipak)  herself says the jovipak is only indicated if 1) you have lymphedema, with or without fibrosis and 2) you swell at night

    Sorry--this is not the club you want to join. But, early treatment prevents progression. It's crucial that you get established with a good lymphedema therapist, and learn how to manage this, and if you need to, force them to establish an on-going relationship with you--as this is chronic--but managable.

    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

    http://www.stepup-speakout.org/treatments_for_lymphedema.htm

    You can resume your life, you'll just have to figure out some modifications--like wear a sleeve when you're doing demolition.

    You wrote that your LE/PT closed your chart: that's all to common and UNACCEPTABLE--this is what happens when a PT manages a chronic condition--the PT model is treat and discharge---it doesn't work for LE. Please contact her again, and tell her your arm is swelling with activity and you need a re-evauation. If you don't find she's helpful--please find another qualified therapist.

    Anyone is welcome on these boards, but when I hear that you swell--possibly even with compression--I hate to write this, but you have passed the 'at risk" (which is any of us who have had any lymph nodes removed and/or radiated) and into the have lymphedema club.

    The good news is that you're aware of your body, sensitive to it, got early treatment, and have every chance of treating it early and getting a good response.

    Let us know how we can help.

    Kira

  • brazos58
    brazos58 Member Posts: 109
    edited August 2013
    Options

    Thany YOU o2 and Kira

    My LE/PT has not closed my chart yet. She wants to see how I fare with increased activitys. She told me that I needed to be 2 cm swell for LE....

    I just got my sleeve and gauntlet this week. I have not worn it yet. The swelling I had was about a month ago , it did go away in the sense my arm is not heavy and full in my armpit and has not returned.... and I had no sleeve at that time.

    also I did not have any node/ or rads... just simple mastectomies. Had a lumpectomy in May.

    So I need to look into ongoing evals it sounds. I have been in touch with my LE/PT on a weekly basis. She seemed more concerned about my incisional tightness/ chest hypersensitvity with my increased activitys at 4 months post op.

    Thank you for getting back to me and for all the helpful info.

    Peace

  • KittyDog
    KittyDog Member Posts: 656
    edited October 2010
    Options

    My sleeve came that I ordered myself in a bigger size.  It feels so much better but I still think I could go a size larger but at least it doesn't feel like it is going to cut my arm in half.

    I am sure I am swollen today.  I have done lots of cleaning and some with out the sleeve on.  Can't quite bath two dogs and clean a fish tank with a sleeve on.  

    Tomorrow is my surgery...I guess the plus of all the work I have done today is that I want give a darn tomorrow.  I will have good drugs tomorrow this time just pray it doesn't swell up horribly before I come home.  See ya in a few days.  

  • scooter-12
    scooter-12 Member Posts: 26,606
    edited October 2010
    Options

    KittyDog....sending good vibes for tomorrow.  I hope everything goes well and your arm behaves.  Take care.

  • binney4
    binney4 Member Posts: 1,466
    edited October 2010
    Options

    Brazos, the "no nodes or rads" doesn't help -- unfortunately. Several of us here have LE from prophylactic mastectomies with no nodes purposely removed.Frown

    With all due respect to your therapist, it is definitely possible to have LE with NO measurable swelling. It's called Stage 0 or pre-clinical LE, and if you treat it at that stage it's easier to manage and to control progression. By your descriptions, though, with visible swelling recurring in response to certain tasks, yours is already Stage 1, which can come and go just as you're describing. Treated now (with Complete Decongestive Therapy that involves MLD, wrapping, exercises, skin care on a daily basis for a period of time) you can expect to keep it in good control and deal promptly and effectively with any flares, as well as reduce your risk of both hardening of the tissues (fibrosis) and infection (cellulitis).

    Have you learned wrapping? If you're doing heavy work and the garments don't help, wrapping might. I use it for situations that might cause a flare-up (that is, more swelling). Flares can happen for any number of reasons: overuse of the arm, weight-bearing on your arm (mine flares if I stand next to a table and lean my arm on itTongue out), eating a salty meal (pizza will do it for me), temperature extremes (either too hot or too cold -- does this start to sound like Goldilocks and the porridge?!),  any injury to the arm or hand, changes of altitude, barometric variations, to name a few that affect some women. For me, not getting enough rest also causes flares, but I've never seen anybody else recognize that, so maybe it's just me.

    Besides the pages Kira linked to, you might want to read and copy this Position Paper on LE treatment from the National Lymphedema Network, and take it to your therapist as a "talking point" when you negotiate for the full treatment you need. Depending on her response to that, you might want to think about finding a new one. Just a thought.
    http://www.lymphnet.org/pdfDocs/nlntreatment.pdf

    Keep us posted!

    Wherria, I too have about a three pound differential with LE swelling, though I've heard of others who have much more than that. There are some studies showing that weight loss has a very positive effect on LE control -- and others showing that weight gain following bc surgery raises the risk of developing LE. So, definitely a correlation both ways.

    Be well!
    Binney

  • binney4
    binney4 Member Posts: 1,466
    edited October 2010
    Options

    Abby, you'll be in my thoughts and prayers -- smooth sailing!
    Binney

  • Firni
    Firni Member Posts: 521
    edited October 2010
    Options

    Abby, good luck with your surgery.  Just write "NO IV/BP" on your LE arm so they leave it alone.

    wherria, I don't know how much of my remaining weight gain is fluid and how much is still just plain fat from laying around for 18 months.  Between surgeries and chemo, I gained 25lbs.  I have lost the chemo bloat in the past year, but I'm still 15 lbs over what I was pre-BC.  I can't work out like I used to, but unfortunately, I still eat like I used to.  A tad too much. Ok  A lot too much.Frown

  • Estepp
    Estepp Member Posts: 2,966
    edited October 2010
    Options

    ((abby))

    Speaking of Pt''s........ I called mine Thursday, last week. I was told she was with a client.. and they let me leave a message in her voicemail.

    Well... I spilled it to her... telling her I cannot even do my job.

    Guess who has NOT called me back?

    This week I am looking for another. SO FEW are LE PT's.

  • Firni
    Firni Member Posts: 521
    edited October 2010
    Options

    That is unforgivable, Laura.   My LE PT was fantastic.  She taught me so much.  Even tho she's had to close my file, she still emails once in a while to see how I am.  Your LE/PT surely knows how desperate you were.  Shame on her.

  • brazos58
    brazos58 Member Posts: 109
    edited October 2010
    Options
    KittyDog... prayers comming your way for a safe passage thru surgery and NO ARM SWELLING! 
  • KittyDog
    KittyDog Member Posts: 656
    edited October 2010
    Options

    Thanks yall.  I already have my LE pink arm band ready to go.  Suit case packed, both dogs washed, a clean fish tank, floors mopped, clean clothes and almost all the dishes have been washed.  Now if I could just go to sleep.

    Wishing everybody a no swelling week.

  • Estepp
    Estepp Member Posts: 2,966
    edited October 2010
    Options

    Ladies.

    I still did not hear back today from my LE therapist. So.. after waiting 5 days... I am done. I want to ask you.....

    I have swelling in the back and armpit ... underarm....and it all hurts. It is too tender to touch. My shoulder bones hurt.

    The question... do you suggest I wear a body compression??? I cannot wear a bra as it hurts > after I am on my feet 8 hours ( work) I am swollen and a bra is horrid to wear to work. Maybe a compression/bra/garment would work???

    I want to add... in my career.. I stand on my feet 8 -10 hours and do repetitive work. There is NOTHING I can do to change this.. and I mean nothing. and I have to work.. and have the income I do...so. I am trying to get all the help I can to keep working... pills... compression.. water.. breathing....MLD... you name it.. I have to do it. I just know... disability would NEVER work out. It is a joke.

    I am going to start drinking good amounts of water... and well, I do all the other stuff.

  • DianaT
    DianaT Member Posts: 13
    edited October 2010
    Options

    Laura ~ you need to find a new PT.... I have swelling under the arm and on my back too... a really weird thing is whenever anyone gives me a hug now, my back where it is swollen itches like CRAZY! The PT uses an ultrasound machine under my arm and does a manual massage, I kid you not ~ within a day, the swelling had gone down and was not tender.  I also had lymphatic back massage.  Once you find a good PT, have your dh go with you because he can help do massages.  When my areas act up, dh does the lymphatic massage and it helps.  I would also see about the compression garmet for your body and arm.  I have seen special orde/custom ones but have no idea exactly the cost or if there is a certain diagnosis you have to have for it.  Do you know what your percentages were?

  • Firni
    Firni Member Posts: 521
    edited October 2010
    Options

    Laura, I cannot advise on wearing a compression vest.  Maybe Binney or Kira can help you.  I'm just a coward for myself.  Always afraid I'll do more harm than good if I don't follow instructions.  I cannot advise you.

    I know disability is a joke.  I don't know how anyone could survive with any kind of quality of life, financially.   I hate to say this tho, you might have to take some time off your career until you get this under control.  And then go back slowly.

  • Estepp
    Estepp Member Posts: 2,966
    edited October 2010
    Options

    Awe Diana... you came to see me. I love you BCBF!!!!!!!!!!!!! I am going to call around tomorrow to find someone here in KC that is better trained. I do have the mummy wraps.. and the compression for my arm... I wear all this about 16 hours a day ( on the right times for these individually).. I do not have a gauntlet yet. I need Todd to come to watch... I did so well in treatment last time... I told him to stay at work... that I did not need him. I had no real idea.. HOW this Le was lifetime.

    Firni... always there to help and boost my spirit. You are honest. I get honest. I am waiting to see what the ...bco...LE pros have to teach me... Binny...Kira... Onebadboob.

    xxxooo

  • Estepp
    Estepp Member Posts: 2,966
    edited October 2010
    Options

    Just a ditty here........

    If others look at me.. they have NO IDEA I have LE ALL OVER MY FREAKIN BODY.

    The ladies at work notice I have one skinny arm and one pudgy arm. Outside of this.. NO one can tell.

    OH HOW I WISH... we were understood.

  • Suzybelle
    Suzybelle Member Posts: 102
    edited October 2010
    Options

    Laura, I was in the same shape as you - I HAVE to work and by 2pm most days my arm would be on fire from working on the computer all day.  Disability is not an option.  My onco. gave me neurontin and it has done wonders.  But, I have to be careful with it.  I have noticed my arm swelling because I'm using it more and not feeling the pain due to the medication.

    I didn't know how bad everyone is scared of LE until I read another post - the woman said she had to 'steel herself' emotionally or something like that to come to the LE and Stage IV forums.  I don't blame her but it's kind of made me feel like Peppy Le Peau.  I am now officially a buzz killer!!!!  Dang it. I need to figure out a way to use this to my benefit! 

  • Firni
    Firni Member Posts: 521
    edited October 2010
    Options

    Suzybelle, if you can figure out how to use LE to your benefit, let us know.  I know I'd like to be able to put a more positive spin on LE.   :)

  • Marple
    Marple Member Posts: 10,154
    edited October 2010
    Options

    Me too........