New Feature: Fill out your Profile to share more about you. Learn more...

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

13567332

Comments

  • kira
    kira Member Posts: 659
    edited August 2013

    Dawn-Hope: you said it so beautifully. We did everything right....

    Wherria, no physician nearby me  who treats LE, but in Evanston, there's Dr. Feldman,--I was surprised that he's not at Northwestern, but at Univ of Chicago, but located in Evanston

    Feldman , Joseph L MD
    Assistant Prof Physical Medicine and Rehabilitation
    American Board of Electrodiagnostic Medicine
    Evanston Northwestern Healthcare
    2650 Ridge Ave.
    Evanston, Il 60202
    847-570-2066

    Fax: 847 - 570 - 2901

    Kira

  • Trishia
    Trishia Member Posts: 361
    edited October 2010

    Dawne-Hope~Yes, I have reconstructed breasts; I have bilateral DIEP breats. I use the littlest weights on the chest press section (you could even just do the bar) and only do about 75% of the reps.  I rest between sets.  It was one of the first things I asked my LE therapist.  I had worked SO hard to become strong, especially in the chest area.  I had implants before and had horrible capsular contracture on the left side, so I was SO weak in the chest area.  She was very encouraging of continuing to utililize the muscles, but not fatigue them.  Modification is the KEY.  I still had a totally pity party meltdown at first, but then I was just happy that I could continue to be fit and to keep the strength and muscle I did have.  I also use the littlest handheld weights during the shoulder section.  I find I don't have to modify for any leg work and can use 15 lbs for biceps and the clean and press section just fine.  Hope this helps!!!! 

  • Lowrider54
    Lowrider54 Member Posts: 333
    edited October 2010

    Another club no one wants to be in...I feel for you guys...having 25 nodes removed, I thought for certain I was a prime LE candidate.  Nothing happened.  Yet.  Well, mets happened but no LE.  Yet.  I say yet because it does not just happen shortly after the surgery - it can happen any time.  I watch that arm all the time.  I watch when I get a little puffy and my rings get tight.  I watch the bugs as they love biting it.  I draw on it when I am in the hospital and anytime I get a shot, I have the other one out and ready before they even get a chance to ask.  I have a wrap but I think I better take a look - its 11 years old but new in the bag - likely it has no stretch left - I figured if I could get it on at the very first sign, I would be ahead of the game. Any truth to that?  If so, I will have to replace it.  I have the 'cord pull' all the time now that I finally finished the reconstruction after 11 years - right up to the where the implant sits.  I was sure that having that surgery was going to trigger it.  Not yet. 

    So, I am over living with the horror of it coming back - the other club no one wants to join - cause its back but there is still the looming possibility of LE - this disease just does not ever end with all the wonderful 'f*** up gifts' you can encounter along with it!  I don't know if I could handle a duel membership in two clubs no one want to be in...

    I know I cannot ever fully appreciate how you guys cope but I sure would love to come over to Suzy's and eat brownies under the bed - I really think you need to get a bigger bed - if you don't mind sharing with a metster - I could even bake up a special batch...Cool 

    God Bless and Hugs to Y'all

    LowRider

  • Suzybelle
    Suzybelle Member Posts: 102
    edited August 2013

    Lowrider, you are more than welcome and there is plenty of room if you don't mind dustbunnies.  And SHUT your mouth about metsers.  I have no idea what that feels like, but if you get the same reaction from folks as we LE gals do, I think I may be able to relate a wee bit...So you just come on!!!!

    I need to back off the brownies as I went to try on pants at lunch and seriously got my feelings hurt.  And I am now eating candy corn flavored Hershey's kisses which are fantabulous.  We definitely have to get a bag of those for under the bed.

    See, I may be nuts but I know how to 'feel better'.  Tongue out

    You need to replace that 11 year old sleeve.  You have enough on your plate without getting this crap.

    Edited to say that I am SOOOOO jealous of the special brownies.  SO very jealous.  Cry

    Edited AGAIN to add my fave rant about LE...how my upper arm bat wing swings back and forth in the shower when I'm washing my hair.  I hate that so very much.  Thank God for candy corn flavored kisses, is all I'm sayin'.

  • Trishia
    Trishia Member Posts: 361
    edited October 2010

    (((LOWRIDER)))  I just bought some spicy chocolate powder that you mix with Merlot and heat to make a chocolatey mulled wine.  How 'bout we drink that while we eat the brownies?

  • alex56
    alex56 Member Posts: 20
    edited October 2010

    I am having my own adventure with LE.  In June my arm started to swell and was very painful.  I called my regular doc and she ordered an ultrasound "just to make sure".  Sure enough, there were DVT blood clots in my left arm (I had a left side mastectomy in January).  The blood clots set the LE in motion, but fortunately it is pretty mild.  They had me do a three month course of treatment with coumadin to resolve the clots before they would clear me for any LE treatment.  SO FINALLY, I was able to start LE therapy last week.  My therapist is awesome.  After the first massage and 24 hours with the wrap, my arm was pretty much back to normal.  My last treatment is this Friday at which time I'll be fitted for a sleeve and night garment.  Hope they work as well as the therapist wrap.  I would absolutely encourage you to find a competent, certified therapist.  I'm a little terrified to have to manage this on my own now.  With the sleeves, anyone know if particular brands are better than others?   LE definately adds insult to injury. 

  • Firni
    Firni Member Posts: 521
    edited October 2010
    I don't know if any brand of sleeve is better.  I have mostly Jobst products.  They work well.  Just be careful putting on your sleeve.  I don't know how many times I've punched myself in the face trying to get that thing up my arm.Yell
  • Suzybelle
    Suzybelle Member Posts: 102
    edited October 2010

    I love the Lymphedivas sleeves.  They are alot easier to get on and come in some fantastic patterns.

    Alex, no worries.  You will learn how to self-manage and you'll be fine.  I developed LE in April and it took me 5 months to get it, but I'm actually feeling like I can take care of this stuff now.  I would rather be giving myself a pedicure than doing MLD, wrapping, etc., but what the hey.  It's fall and I'm wearing close-toed shoes, so it's all good.  Tongue out

    Trishia, I can't decide if your chocolate wine sounds yummy or hurlacious.  You will have to give us a review!

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

    I am so sorry sisters.... I am humbled.

    I wrapped my arm all day... nothing.. no help...

    I have no idea how to..  get the LE down.... get the pain to stop..?? I need to go back to the LE therapist... but I have NO money... economy has been terrible to my career...

    I have no time over the next five days..... so I HOPE... this weekend... I can online teach myself to rid my LE somewhat.??

    Ladies... you are so strong... I admire you and HOPE for you !

  • Firni
    Firni Member Posts: 521
    edited August 2013
    Laura, and everyone else that can't get to a therapist:  And really, no one should have to teach themselves how to get rid of the swelling and pain.  Laura, I hope you can find some help.
     
     Here is a link to the Healthy Steps Lebed Method of exercise.  These exercises will help you keep your lymph system moving.  See if there is a class near you.  Insurance doesn't pay for it, but I paid $50 for 6 weeks of class.  Check with the cancer centers near you to see if anyone is conducting these classes. My LE therapists did my class.  They really do help.  I really don't know where the opening part 1 is.  But go thru the other sessions on the right as well.  In the classes you do the opening of stretching and then it's a bunch of fun gentle dance steps with other women going thru the LE.  It's fun, uplifting and like I said, it helps.  Makes you feel good.
     
    I do the opening stretches twice a day and I really believe it helps keep away the flares. 
     
  • DianaT
    DianaT Member Posts: 13
    edited October 2010

    not reading everything as I am exhausted and going to bed but yes LE FREAKING SUCKS!!!!!!! I took my wrapping off because I started holding my arm differently which in turn caused some serious neck pain.  I am trying to do the massages at home but still waiting on my actual sleeve.  will be back tomorrow to read more.

  • kira
    kira Member Posts: 659
    edited August 2013

    Laura, Firni's advice is great, the Lebed exercises are great for draining the lymphatics and she put most of them on youTube.

    http://www.youtube.com/watch?v=k6f7N8dtJLM&playnext=1&videos=CN7SVU2cR7E&feature=mfu_in_order

    There are 43 in all, and her new DVD is only $15

    http://www.lebedmethod.com/

    JoAnne Rovig has her self help videos on the web--I got to meet and hug her at the NLN (lots of hugging going on there...)

    http://www.nwlymphedemacenter.org/

    It looks like the HR 4662, the bill to promote lymphedema insurance coverage, is dying in Congress, but no woman (or man) should have to suffer from LE--why the hell isn't it covered, in full, for ever--it's cost effective to treat it! The lost wages and the increased medical costs of infections and complications have been proven to be reduced by treatment. 

    http://www.ncbi.nlm.nih.gov/pubmed/19289624

    CONCLUSION: Although the use of claims data may underestimate the true incidence of lymphedema, women with BCRL had a greater risk of infections and incurred higher medical costs. The substantial costs documented here suggest that further efforts should be made to elucidate reduction and prevention strategies for BCRL. (BCRL=breast cancer related lymphedema)

    Why is it so hard?

    Laura, you are a brave and wonderful woman and this should not be so hard.

    Kira

  • thePuppetLady
    thePuppetLady Member Posts: 21
    edited October 2010

    o man, LE scares me more than the actual surgery I'm due to have in January.  I'm new to this--month outa DX, going into 2nd chemo hit--so I'm getting as much info as I can.

     I'm a right-armed professional puppeteer who works with large hand/rod puppets. My surgery will be on my right breast and I have lymph node involvement.

     Talked to my BS about this and she dismissed my fears, saying "well, we'll just not let that happen."  wanna put that in writing, doc?

     I'm curious, why would they take ALL the lymph nodes out on one side?  Is it because it's the sentinel that's involved?  Wish there was some way to test lymph nodes in situ and if they're bad, out they go and if they're good, let them stay.  Aren't they the first defense against mets in the first place?  or am I just confused....

    thanks...ellen

  • gentianviolet
    gentianviolet Member Posts: 105
    edited October 2010

    When I was biopsied I also had an ultrasound.  That was followed with an extensive exam and I was told that they did not think I had any node involvement.  However once I had surgery it was the second lymph node that had micromets so my surgeon took out 12 more; I had a total of 14 removed.  No one mentioned lymphedema but some of my mother's friends had breast cancer and developed  LE, so  I questioned all my doctors from my surgeon to my radiation oncologist.  All  seemed to think I was paranoid about it.

      I used to play tennis and I loved that game.  Previous to my diagnosis I had taken belly dancing for about three years and I found that I could still do that and it gave my lymphatic system a good workout.  Daily I do belly dancing moves which involve hips, arms, and chest.  Does this help???  At this point, I think so.  I did try tennis one day (with a lymphediva sleeve) and found my arm felt like it weighed 40 pounds after the game.  I am not sure I will try that again.  I lift some weights. I am grateful that I am still alive.

    And I do hate how this has changed my life forever, I hate that even my closest childhood friend does not get it and tells me I worry too much about my arm.  I hate that my DH tries to empathize but thinks I can do everything with that arm that I did before.  I hate that no one understands except the people here and I hate I have to explain to nurses not to do blood pressure readings in that arm.  I hate worrying that mild will become a severe case and I hate worrying about every little bug bite, cut, or hang nail will make that happen.  

    So, my sisters, I do hear your pain and I do get it.  Now how do we teach everyone else? 

  • kira
    kira Member Posts: 659
    edited October 2010

    Ellen: aside from magical thinking on the part of your breast surgeon ("we'll make sure you won't get it"), maybe you could 1) discuss the extent of the axillary dissection you need to control your cancer--there was a recent study that said that full axillary dissection didn't necessarily translate into better survival--I don't have the reference, but it was mentioned on the boards and I'll look for it--perhaps the surgeon can discuss this with you, 2) at the recent NLN conference, Dr. Cormier, a surgical oncologist said she saw less lymphedema when she did full axillary dissections for melanoma--she thought maybe it was because she used a bigger incision and put less stress on the tissues, 3) another lecturer was firm on the notion that women not stretch through the axilla for the first 10 days or more, because the delicate lymphatics are healing.

    Also, perhaps a pre-op evaluation by a lymphedema therapist would help:

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

    Just some thoughts, I think what you do is amazing.

    Silversmith: why don't more people get it?? I used to play tennis three times a week, and miss it and my tennis partners, but won't chance it.

    Why do people blame us for reasonable concern, and call us paranoid, or deny our reality.

    I'm glad to be alive also, but that doesn't make LE less of a burden.

    Kira

  • Firni
    Firni Member Posts: 521
    edited October 2010

    I cut my finger on my LE hand at work a couple weeks ago.  I filed a workers comp claim and saw the doc.  He thought I was crazy.  Cleaned it and put a band aide on it.  He would not give me any antibiotics altho I told him of my concerns.  I didn't have any problems, but I wanted the file opened in case I got infection.  Never in my life did I think I'd go to the Dr. for a cut on my finger.

    KIra, I didn't know I could buy a DVD for $15.  Thanks for that info.   

  • faithandfifty
    faithandfifty Member Posts: 4,424
    edited October 2010

    I have a sad story to share.

    My recent 'chapter' with my very mild LE, (as described by my LE therapist, though she doesn't want to 'discount' my pain or discomfort..... and she does feel that I would continue to benefit from wearing my sleeve/gauntlet combo on a daily basis -- though it's possible she thinks I might be able to experiment with not wearing it on some occasions..... and she definitely thinks I should ALWAYS sleep in my swell spot garment which looks like NFL padding.)

    A week ago, last Saturday, I got up before 6:00 a.m. to go downtown to present a three hour presentation which requires me to jump around, sing & sway, hopping, bouncing, bopping non-stop the entire time. My husband is able to accompany on many of these adventures. We arrived downtown hours early & he unloaded a third of a car's worth of "stuff" for me, hauling it to the fourth floor.

    All went well. By 1:00 that afternoon we were departing from the site. He doing all of the lifting, toting, hauling. Me being the diva. So at hour #7 he is being VERY protective and asks me to sit in the car while he loads everything back in.

    He then drives us 11 hours to our final destination for the day.

    We arrive minutes before midnight. (You would all be very proud, as I do all sorts of deep breathing, pumping my arm, drinking water, jumping up & down at every rest stop, etc etc.)

    I go to the back of the car to get my artist portfolio, to bring inside the last five years worth of my artistic effort to 'finish' the quilts in our little haven.

    It's not there.

    It's not in the car.

    The portfolio is no where to be found.

    It was there when we started the day. I know it was. I packed it with adoration and joy the day before. The 15 quilts that I created over a five year time frame were neatly packed into my big black leather satchel -- which was the last thing placed in the final four inches of space available.

    Ten days later and there is no happy ending to the story.

    The original art to my latest picture book is gone. Vaporized. Stolen? Lost? Gone.

    This experience to me is the collateral damage that is LE.

    I have been compromised.

    Yes. Life has continued, but even under the very best light, my life has been compromised.

    I will rethink the packing up scenerio for some long time to come. Nothing changes.

    I am exhausted by doing what is my professional work. I can still do it. I can still contribute, but I am exhausted -- even when I have support & it goes well.

    So my husband has taken over the lion's share of physical labor to help & protect me and in that process, he somehow 'lost' this mega significant piece of my world.

    I sat in a stupor for the first 36 hours or so.

    Life goes on.

    The good news is that the book is printed and the art will live on, forever. At this point I won't be able to share that 'process' with any of the children/teachers/parents who see the book -- as has been my gig in the past.

    How sad can any one person feel?

    LE, albeit minor LE, has compromised my world.

    There aren't enough brownies to make this better.

    I can't put a happy face on this.

    ..........and again, I have it "easy" on the spectrum.............

    Cry 

    It wasn't BC that has done this to me...... it's a 'very mild' case of LE.

  • gentianviolet
    gentianviolet Member Posts: 105
    edited October 2010

    Kira:  I went to visit my tennis partners this last week after not having seen them for about 9 months.  They asked when I could return to playing and was my arm all better now so that I didn't have to wear a sleeve anymore.  I explained that I could probably play for an hour but I would have to have someone fill in for me the second hour.  They couldn't understand why since I had had so many months to rest it.  I had thoroughly explained LE to them the first time I returned after surgery.  I did tell them that at this point I was somewhat concerned about the tendonitis I have had ever since I had taken the Arimidex and was not sure I should even try to play at all.  So one of them said, " So it WAS your arm and now it's your ankle too.  Do you even really want to come back to play?"  Not only do they not get LE thing but they don't get the after cancer side effects from medication that you HAVE to take thing either.  I do give up trying to explain to people; there are simply no words that can adequately explain life after a cancer diagnosis,

  • thePuppetLady
    thePuppetLady Member Posts: 21
    edited October 2010

    thanks kira for the info and I'll certainly discuss how many she may plan on taking out in surgery.

    And I just checked that LE therapist website you provided...there's a therapist within 5 miles of me, at the hospital I'll be having my surgery.  score!  I'll definitely check that out, thanks!!..ellen

  • Estel
    Estel Member Posts: 2,780
    edited October 2010

    faithandfifty - My heart hurts after your story.  I am so, so sorry.  What you wrote deserves to be published somewhere because it is such a good example that even minor, even mild, LE is devastating.  I am so sorry.  Cry

  • Estel
    Estel Member Posts: 2,780
    edited August 2013

    silversmith5 - People don't get it.  At my work people have supported me, prayed for me and now that I'm 12 weeks post-exchange the feel I get from people is OK, let's get on with things, get on with your life.  They just don't get it.  Your story is one reason why I'm growing to despise pink October ... people think slap a pink ribbon on it, go thru your surgery and it's over and all is well.  Well, it's not.  I'm sorry that your friends just do not get it.

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

    Oh Faith........ can I cry now... please. I am so sorry. When LE gets to your career..... I understand. No words from me will fix it for you...But I had to say... I am beyond sorry and I hold you close... sister.

    Firni and Kira... Thank you both for your education. I am going to get the CD .. I know I have been looking the other way for too long... and I have to get " into" this. My body swells too.My LE therapist does not have me doing anything but wrapping like a mummy as many hours a day as I can handle... for 5 weeks at start of flair. She does not think the compression garments do much... so she told me never wear them to bed.... and where them when flying and working if needed.  I will be getting more educated on this all soon. I am not sure what is going on with me... I had SO much energy when this BC journey started.. I was beyond involved in my healing...

    now.... I have to make myself go to work... research anything going on in the body.... go out and do stuff on my days off... I have NO desire.  I hate even typing this... I hope not too many sisters that know me on here are clicking on my name and seeing where I am posting... as I really do not want to get this deep anywhere else.... this thread I started so that I could get it out and so could YOU. I don't know.....

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

    Ellen...I am sorry you have joined our BC group... :(..... I just saw your posts sweety... threads like this one are probably hard for newly DX to deal with and I am sorry you are posting here...:(...... Remember... IF you ever get LE... the ladies here can HELP YOU if you want them too.. they are angel ladies!  Blessings. ps...... lets just say.... YOU ARE NOT GOING TO GET LE!!!! Positive thoughts  for you... and I just now said a prayer for you.

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

    Silver......... I am SORRY for you too... no one gets it... how freakin' rude too btw....... " do you even wanna play?"..............................

    NO, I WANT TO SIT HERE WALLOWING IN MY PAIN AND LOSS OF MY LIFE .................WHATEVER...........GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR

  • thePuppetLady
    thePuppetLady Member Posts: 21
    edited October 2010
    estepp, I send a prayer back to you...I pray you find some healing and peace.  What you are going through, my heart just breaks for you...ellen
  • Firni
    Firni Member Posts: 521
    edited October 2010

    Laura, you can get this under control.  You have to face it and manage it.  You must not push your self physically until you do.  If you have not been taught how to a manual lymph drainage massage, you MUST find the money to go to a therapist to learn how.  Take DH with you and have him learn too.  He can help you.  My DH does mine for me sometimes.  You cannot learn to do this properly by yourself.  Wraps and sleeves and gloves, etc are only part of the tool box against LE.  You must protect yourself with breathing, exercise and massage.  It is time consuming, a pain in the a$$ and a necessity.  My heart is heavy for you.  But you can do this.  You are strong.  You are our cheerleader.  Now we will cheer you on as you beat back this beast.  I am praying for this for you.

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

    Ah Firni..... now you are making me cry with your kindness...

    I know I have to face it...

    Since the day I ended all treatment for BC/Oct 17th 09...... I seem not to want to face anything. This is not really working for me. I have been shown MLD... I also have been trying to learn all I can on the LE site posted here...

    Thank you for helping... xxxooo

  • Firni
    Firni Member Posts: 521
    edited October 2010

    (((((Laura)))))

  • KittyDog
    KittyDog Member Posts: 656
    edited October 2010

    I am still new to all of this and I already hate it.  I got my first sleeve Friday and if you read my post I am disgusted by it.  I haven't gotten my nighttime stuff or my compression bra yet.  If it doesn't come in Friday it will be a while before I get it.  My surgery is Monday and I can't drive for two to three weeks.

    grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr  Wearing the sleeve despite being tight is going better.  Talked to my LEPT tonight at the LE support meeting and we think I am just a wee bit fluffy.  lol  I at least like her terminology.  I do think I was swollen the day I wrote my disgust post and I may have even had it on with a slight curve in it like you can do with pantyhose sometimes.  Anyway.  Today has been better...tomorrow may be a different story.

    So why are diuretics bad?  I take one nightly for my blood pressure.

  • lmc1970
    lmc1970 Member Posts: 73
    edited October 2010

    Another winge from me....

    All the results are in and I have cancer in my supraclavicular nodes on my left side and possibly in the nodesin the pectoral muscle...I didn't even know that was possible! I'm so un-informed...I really thought the swelling there was because of the LE so I let is slide by instead of getting it checked out! I guess I've been ignored so much I just thought it was best to put up with that pain.

    The docs have offered Abraxane and radiation. No surgery. I guess in a way that is for the best-once those nodes are out I'm sure the LE would get worse. When I told the doc about the pain he said "so you haven't been the LE clinic?" um no didn't know there was one, might have been handy to know 6 months ago when I told you guys about the pain too! In the end he just prescribed pain killers!

    I don't wrap my arm or see anyone for help. I've been in denial I guess and thought it would get better. It would have probably helped if the docs at the hospital weren't also in denial about LE and it's impact on our lives!

    I had to take pain meds so I could drive my car and take my daughter to lunch. I don't want this to be my future...

    PS if anyone has any advice on Abraxane I would appreciate it-I did create a post but have only had one reply.

    Thanks for this safe place to rant and rave....only you guys truly get it!

    Lisa