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

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Comments

  • cookiegal
    cookiegal Member Posts: 527
    edited July 2011

    3 jays...I am wrong...mine do not have tips...but I think they can make them with....they make gear for the whole body.....I think they are more geared to burn people...

    I just looked at the site...they do..heck they make finger only gloves...they are called finger sleeve

  • Estel
    Estel Member Posts: 2,780
    edited July 2011

    daffodil45 - island ... pacific nw ... misty & cool ... sea breeze... 58 degrees ... when can I come???!!!!  Laughing  .... or better yet, when can I move in?  Wink

     It's going to be heat indexes of the 110+ this week and 80% humidity ... just shoot me.  Surprised

    ironic on the lebed connection.  small world.

  • njbhwgirl
    njbhwgirl Member Posts: 59
    edited July 2011

    daffodil: I envy that weather.. Here in NJ will be 90 all week.. I should definitely start swelling by tomorrow. Heat/Humidity not a friend to me as it is not to others here as well.

    I have a costco right down the street from me. I am going to buy a cami and see how it works.

    duckyb:  nice dinners. best part is you didn't have to cook

    cookiegal: that is great news... Feels good to hear positive things about this crappy LE

    RE: wearing sleeve in water.....I was at a graduation party last weekend and a lady there had her sleeve and gauntlet on and she was talking about how she just came back from Punta Cana and wore here sleeve in the water all. When she got back to the room she rinsed it out,wrapped herself for the night and did the same thing again the next day. Don't know if that helps anyone who is going in the water or not..

  • binney4
    binney4 Member Posts: 1,466
    edited July 2011

    Getting our garments wet increases the compression somewhat, so if you're going to wear it in the water just keep in mind it could get tighter -- not always a good thing. (Y'know how they tighten up when you wash them?) Most people find their garments aren't necessary when they're in the water, and the freedom from them is something I really look forward to about swimming.

    Leah, what happens when you do the water aerobics without garments? If it's not swelling more then you don't need to wear them. If you are having trouble with increased swelling after swimming, then you can try it with the garments, but be mindful of the added compression from getting them wet.

    I'm not sure what chlorine might do to the fabric, so if you're planning to swim in a pool either wear an old pair that you don't need any more, or call the manufacturer and ask about your specific garment fabric.

    Enjoy!
    Binney

  • BMac
    BMac Member Posts: 115
    edited July 2011

    Leah, thanks for the insight.  I defintely need to stop feeling that I somehow owe these people an explanation.  Would they go up to someone in a wheelchair and say "What have you done to yourself?"  I don't think so.  Having said that, last night my husband and I were out for a walk and the neighbours around the corner from us were outside.  The wife asked me what happened, so I explained; but, I DO feel like I have a bit of a relationship with these people.  I swear though, no more "stranger" explanations!

  • SharonMH
    SharonMH Member Posts: 46
    edited July 2011
    1. Hi I just have a question about LE. I had mx a year ago and rads one year ago.  I still am stiff and sore. I do the stretching 3 times a day. I don't  have LE but I am showing signs of it. My armpit and chest have really been much more sore for the last two weeks. Even hurts to take a deep breath.  Just want to know if LE can happen just in your armpit and chest and not in your arm?  I have a app. with a cert. PT in two weeks to see what she says.  SharonH.
  • kira
    kira Member Posts: 659
    edited July 2011

    Sharon, here is a link to a page on breast/truncal LE, and there is an article linked at the bottom of the page with good pictures.

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

    Have you seen your doctor to evaluate the pain with the deep breath? Truncal LE can hurt, but it's good to be examined by a physician as well.

    Kira

  • duckyb1
    duckyb1 Member Posts: 9,646
    edited July 2011

      Hi Ladies.....................went today garment in hand................specialist put it on, and the company who made it, made it too long now it has to go back and be fixed.........this means more wrapping..........................disappointed..................pissed................and that is all I'm gonna say for now................what a kick in the ass....................Cry

  • cookiegal
    cookiegal Member Posts: 527
    edited July 2011

    DUCKY :(

    I remember when they had to send back my first custom glove...I almost cried.

  • KittyDog
    KittyDog Member Posts: 656
    edited July 2011

    Well I am glad somebody brought up the swimming again.  I am going to the beach soon.  I am thinking I need to wear my sleeve after yesterday.  After standing in the sun in a hot line to sign my DD in for Girl Scout camp, my arm is very puffy today.    I do have my too big sleeve.  I think that the previous posts answers my question so Yes I will be wearing it while on the beach.  I will probably just be sitting in my chair taking pictures of my girl anyway.  I am scared of the ocean since my balance is still off.  Now the pool...I will get in.

    Oh and wow I was off for the weekend packing and there were three new pages of posts.

    Ducky...I am sorry your new sleeve did not fit right.  At least your fitter didn't make you wear it to small like mine.  I don't use him anymore after the second time of trying to order one too small.

  • Ondagrow
    Ondagrow Member Posts: 133
    edited July 2011

    Hi All...

    I AM SCHEDULED TO HAVE DIEP FLAP ON AUGUST 17...  Left delayed...  Right immediate...

    I am perplexed...  I am upset because they want to take sentinel nodes from my non-cancer side...  My MRI results from July 14, states no cancer...  I do not want them to put my Right Side in jeopardy for lymphedema...

    I understand PRECAUTION...  I UNDERSTAND THAT ONCE YOU REMOVE THE BREAST THAT THEY CAN NO LONGER just do sentinel node removal...  However, if I get a reduction, my nodes can remain untouched...  I BELIEVE IF THERE WERE AN ISSUE, IT WOULD NOT BE AN OPTION... procedure is not a good enough reason...  Why do the MRI...

     I FEEL IT IS OVERKILL...  I am not trying to be combative...                                                            

    I need my right arm...  The nerves in my left arm are SHOT...  I am in school for PHD...  I do not want to chance it...  I am right handed...

    Where are they going to take my blood pressure...IV...  I AM TIRED OF MAKING DECISIONS...  I THOUGHT I WAS CLOSE TO THE END...

    I was not going to mention it...  I cannot deal with this alone...  Any experiences...  I totally understand WHY they want to do it...  However, uuuggghhh...  I research and talked to several doctors...  I thought I had a resolve.  After speaking to medical oncologist earlier today...  I just woke up livid... lol

    I STILL DO NOT WANT TO RISK IT...

    Has anyone who had non-cancerous breast remove ever challenged the sentinel node removal...

    SORRY FOR RANTING...  I AM TIRED OF CANCER...  Today is not a good day....

  • omaz
    omaz Member Posts: 4,218
    edited July 2011
    sohard - What is their reason??
  • BeckySharp
    BeckySharp Member Posts: 465
    edited July 2011

    Ah Ducky--I'm so sorry.  With all of that measuring why can they not get it right?

    Sohard--I am not having to make the kind of decision you are having to do. But I am thinking about you.  Hope someone comes along who has been there.

    Becky

  • duckyb1
    duckyb1 Member Posts: 9,646
    edited July 2011

    I took it to my specialist.........remember she did not measure me for that very reason.........whether it was the measuring. by Comfort and Care, or whether it was the company who made it Jobst ....Ever..something...who cares........I just know they made it too long for my arm...............the elbow darts were above where they should be, so I guess they will try to fix it...........not happy about that either...........it should have been right the first time, or they should be made to make the whole thing over...................my specialist even measured my arm again today; to make sure it hadn't changed in size, and that was it ...........the arm was exactly the same as when we did it and she said "your ready for a sleeve"................oh well.

  • Ondagrow
    Ondagrow Member Posts: 133
    edited July 2011

    OMAZ...

    THEY SAY BECAUSE ONCE YOU REMOVE THE BREAST... THEY CAN NO LONGER GET TO SENTINEL NODES... ITS PROCEDURE...

    I would have to have full node dissection if they found something in breast... MRI SAY IM CLEAR...

    If I  reduce breast and do not need SN removal... They do not deem it necessary... uuuggghhh....

  • Leah_S
    Leah_S Member Posts: 1,929
    edited July 2011

    sohardbnme, it's a real tough decision. I'm doing the same surgery this fall. So far BS hasn't said anything about SNB but I see her this Thurs so we'll see what she says.

    I so much do NOT want an SNB - I already have LE in the cancer side. Yes, it's mild and well-controlled but I WANT IT TO STAY THAT WAY!!!!

    Best of luck.

    Leah

  • daffodil45
    daffodil45 Member Posts: 18
    edited July 2011

    sohard....

    I had a prophylactic on my non cancer side, and they took the sentinel node, had a full dissection on the right side. My LE is on the right.... nothing on the left...at all, and that is where I have had all IV's, blood draws, wasp bites, kitchen knife slaughterings, etc. Nothing.

    Another tip for all.... after my first bout with cellulitis my doctor gave me a prescription of Bactroban ointment (bottomless refills). If I get even the slightest scratch, cuticle issue, bite etc., on my LE side, I slather it on, with a ban-aid for 24 hours and leave compression off for the same 24. It works. Not one infection since I started doing that. Maybe I am just lucky, but it seems to work!

    And we had a swealtering high of 72 degrees today. You are all welcome! Actually, wouldn't that be kind of fun?? My DH and teenage sons would run seeing all of those compression contraptions ( well, my 16 year old is the one that wraps me like a pro....he can stay!)

    Best...

  • o2bhealthy
    o2bhealthy Member Posts: 1,089
    edited July 2011

    I had a prophy LMX and there were no nodes removed.

    I cannot understand the reasoning if you are having a prophy MX/DIEP on the non cancer side.  Just because 'they' say it is procedurein DIEP does not mean you have to allow it if they cannot provide a more concrete benefit for YOU specifically!  You know your body,  It is your choice as to what you consider an acceptable risk based on the perceived benefit.   Based on your signature, you are most liking being treated agressively based on Triple positive and node positive on your cancer side.  Exactlly what would be the benefit to YOU and YOUR treatment plan should they do do the SNB? Is there any benefit at all? 

    I am really sorry you are having to battle with your surgeons, I wish you the best with your decision and your doc's.

  • omaz
    omaz Member Posts: 4,218
    edited July 2011
    Ahh Sohard  (((((Hugs)))))  Did you finish your herceptin? 
  • Ondagrow
    Ondagrow Member Posts: 133
    edited July 2011

    OMAZ,

    I have MY LAST Herceptin July 29...

    How about you...

    Thanks for all you input...

    I would do it if the reason WAS I had a lot of nodes ON CANCER SIDE...

    They are telling me to keep right breast and get a reduction... So I can have bigger breast,during diep...

     They told me removing my non-cancerous breast was overkill...  How can they say that in one breath... and then, uuuggghhh...  

    MY MRI IS CLEAN... Got results FRiday... LOL

    I see breast surgeon Thursday...  

    THEY WANT ME TO do it because it is PROCEDURE....

  • Estepp
    Estepp Member Posts: 2,966
    edited July 2011

    Kira/Binney.... and all other super LE educated sistas, this question is for you:

    Have you heard about some study that says.... remover all node in early stage BC is no longer called for and will not be done? If someone have a smaller tumor ( 3cm and under) and only a few node +, they will NOT have the nodes removed. This is a long term ( 10 yr) tested study. I think Sloan Kettering....

    Have you all heard this.... and..... if so....... what do you think?

    I , myself, had a 3cm tumor and 1-3 nodes+...... and since I had a mast and rads..... I would NOT have had to have them out... from what I hear.... in this new study....

    GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR

  • Estel
    Estel Member Posts: 2,780
    edited July 2011

    Estepp - I'm no veteran, but yes I've heard of that study.  If I were to do this all over again I would have refused sentinel node biopsy, especially on my prophy (right) side.

     sohard - Have you had the gene test (BRAC1 and 2).  If I were positive for the gene test I would consider it but that we would be my only reason to consider it. 

  • cookiegal
    cookiegal Member Posts: 527
    edited July 2011

    so hard...oy how frustrating.  

  • Leah_S
    Leah_S Member Posts: 1,929
    edited July 2011

    The study showed that ALND didn't provide survival benefits IF a woman had a small tumor, the SNB involvement was minimal and she did chemo & rads. SNB was still done, rads to axilla was done. Both of those are risk factors for LE so I don't know if this will help a tremendous number of women.

    I have seen the statement "surgery puts a person at higher risk of LE than rads" but I don't know what that's based on. How many women have only rads, no surgery? If a woman develops LE after surgery but before rads then it was the surgery, but if LE develops later than who knows which it was - it could even be a combination of the two.

    Leah

  • kira
    kira Member Posts: 659
    edited July 2011

    Laura, the study was done by Guiliano--out of California, it was so controversial that major centers refused to participate, let me post one abstact:

    http://www.ncbi.nlm.nih.gov/pubmed/20739842 ct

    Ann Surg. 2010 Sep;252(3):426-32; discussion 432-3.


    Locoregional recurrence after sentinel lymph node dissection with or without axillary dissection in patients with sentinel lymph node metastases: the American College of Surgeons Oncology Group Z0011 randomized trial.
    Giuliano AE, McCall L, Beitsch P, Whitworth PW, Blumencranz P, Leitch AM, Saha S, Hunt KK, Morrow M, Ballman K.
    Source

    John Wayne Cancer Institute at Saint John's Health Center, Santa Monica, CA 90404, USA. giulianoa@jwci.org
    Abstract
    BACKGROUND AND OBJECTIVE:

    Sentinel lymph node dissection (SLND) has eliminated the need for axillary dissection (ALND) in patients whose sentinel node (SN) is tumor-free. However, completion ALND for patients with tumor-involved SNs remains the standard to achieve locoregional control. Few studies have examined the outcome of patients who do not undergo ALND for positive SNs. We now report local and regional recurrence information from the American College of Surgeons Oncology Group Z0011 trial.
    METHODS:

    American College of Surgeons Oncology Group Z0011 was a prospective trial examining survival of patients with SN metastases detected by standard H and E, who were randomized to undergo ALND after SLND versus SLND alone without specific axillary treatment. Locoregional recurrence was evaluated.
    RESULTS:

    There were 446 patients randomized to SLND alone and 445 to SLND + ALND. Patients in the 2 groups were similar with respect to age, Bloom-Richardson score, estrogen receptor status, use of adjuvant systemic therapy, tumor type, T stage, and tumor size. Patients randomized to SLND + ALND had a median of 17 axillary nodes removed compared with a median of only 2 SN removed with SLND alone (P < 0.001). ALND also removed more positive lymph nodes (P < 0.001). At a median follow-up time of 6.3 years, there were no statistically significant differences in local recurrence (P = 0.11) or regional recurrence (P = 0.45) between the 2 groups.
    CONCLUSIONS:

    Despite the potential for residual axillary disease after SLND, SLND without ALND can offer excellent regional control and may be reasonable management for selected patients with early-stage breast cancer treated with breast-conserving therapy and adjuvant systemic therapy.

    Laura, unfortunately, this abstract doesn't have the selection criteria for avoiding ALND, which was tumor less than 5 cm and 1-2 positive nodes.

    Here's his JAMA abstract:

    http://jama.ama-assn.org/content/305/6/569

    Patients were women with clinical T1-T2 invasive breast cancer, no palpable adenopathy, and 1 to 2 SLNs containing metastases identified by frozen section, touch preparation, or hematoxylin-eosin staining on permanent section.  

    There's a great thread started by Suzy, called "Don't look back, seriously"

    I think nodal sampling is going to be questioned more and more. Already it's been shown not to help prognosis in melanoma depending on the stage of the melanoma--it's tissue depth.

    Sohard: I'm sorry, but this protocol is ridiculous, IMO--why would you sample nodes in a breast without disease?? Nodal sampling is done for staging and local control. You need neither. Personally, I'd refuse it.

    Kira

  • Estepp
    Estepp Member Posts: 2,966
    edited July 2011

    Thank you ladies.... this is exactly what I wanted to read. I too, think it would do nothing to prevent LE??? They are still testing the nodes and doing surgery???

    Thanks girls! xoxoxo

  • duckyb1
    duckyb1 Member Posts: 9,646
    edited July 2011

    Hey Ladies..........It sucks............no matter how we got it...........it sucks..........and we are stuck with it...................we can 2nd guess what was done, but keep in mind when this happened to us originally we probably would have done whatever it took to know exactly what we could do to "save ourselves" .......................I hate it, but looking back, only adds to the stress of LE.............we can't go back, and no one hates this more then I do, so lets just move forward, and try to deal with this as best we can, and not worry about "what could have been"............we did the best we could at the time................hugs ladies

  • daffodil45
    daffodil45 Member Posts: 18
    edited July 2011

    GGGGGRRRRRRRRRRRRRRRRRRRROWL. Spit.

  • Melanie_Ann
    Melanie_Ann Member Posts: 53
    edited July 2011

    A funny little story for you all...

    I went to target today b/c my LE therapist suggested that I get a compression top. I think I have a  little swelling in my back. So I try on a spanx top and I.can't.get.it.off!!!!!

    I'm in the middle of rads and my right side is pretty sore and I was trying not to aggravate my LE and I just could not get that stupid thing off. I imagined myself walking through the checkout line and just pulling out the tag for them to scan. It felt really good while it was on but I can't imagine putting that on and taking it off everyday...

    I eventually got it off..but it took a lot of wrestling. I felt so rediculous. 

  • duckyb1
    duckyb1 Member Posts: 9,646
    edited July 2011

    Melanie.....................oh my God hysterical..........I'm having a visual of you trying to get out of that thng...........sounds like something I would have done, but you look 30 years younger then I am, so imagine that happening to me........................

    Yesterday and today were shitty days to say the least, but that story gave me a great laugh, which I needed...............thanks girlfriend.

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