Topic: GRRRRRRRRR I HATE LE..........

Forum: Lymphedema — Talk with other about how to lower your risk of lymphedema and how to manage it if you've been diagnosed.

Posted on: Oct 14, 2010 09:56PM

Posted on: Oct 14, 2010 09:56PM

Estepp wrote:

EVERYONE can tell I have it... my arm just looks so fat..... I have been to.... and going back to.... therapy..... with a LE specialist... I wrap... I wear compression garments when flying.. exercising... BLAH BLAH BLAH......

I do it all, and I do it right. As a Stylist..... I was told... My job was a good profession to be in as it will help my lymphatic flow.... well....... MY FREAKIN' body... MY personal LE gets MUCH WORSE when I work........

I have to vent this....this is just such an angry spot... such a bad thing.....

If I change the way I dress..... if I do not work in my field...... if if if......................... my LE is ok.


I pray for a cure for this... I PRAY we all can get NODE replacement SOON... PLEASE allow science to figure out a way to REPLACE our nodes.. SOON.

I would rather have chemo all over again... than deal with LE.

Just a post.... to vent.... for ALL OF US. I do not need a pat on the back here sisters.. I need you ALL to get mad with me....... Post YOUR pain in this trip we call LE.......

We are the Ta Ta Sisterhood! Her2+ BC is what I had.... and yes sisters.. I had lymph node involvement...Plus Radiation AND Implant only Reconstruction. DX 6/25/08
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Mar 7, 2012 02:34AM 3jaysmom wrote:

Leah: my le therapist oked sleeve covers like binney showed.. (thanks binney) but warned.. no compression on top Or bottom, either.. mine are more like leg warmers( arm warmers) but are lacy, etc.. like you said. i got black gloves and sleeves this time.. can't wait to see how they look together!!!

  i also have been known to go to  the $ store, buy a pair of trouser socks (they also are stretchy loose ) lace, and wear THEM over my old beige sleeves.. again, no compression anywhere... did you email lymphdivas to see if they'll back order for you??? 3jays

3jaysmom Chemotherapy 4/20/2009 Dx DCIS, 2cm, Stage IIB, 1/27 nodes, ER-/PR+, HER2-
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Mar 9, 2012 12:12AM Estel wrote:

Thank you all for your comments on the pressure issue.  I just now had the opportunity to watch the video that Binney4 posted on the last page.  It wouldn't work on my Mac.  All I can say is "Wow."  I need to watch it a couple of more times to comprehend everything (didn't get the best grades in Physics! Undecided) But I found it really, really helpful.  I had no idea that pressure was that big of a deal.  

I've since learned that while the big tornado was about 20 miles east ... about 5 miles south we had an EF2 tornado.  So the pressure change had to be crazy.  One of the things that I didn't understand in the video was if the pressure is less the further up you go in elevation ... does less pressure make us swell more?  So we need tighter compression the higher in elevation ... ??? Sorry for the stupid questions ....

The last frontier in my LE world is flyiing.  I am so, so scared to fly.  My arm so badly the night of the storm ...If I was that affected pain-wise in severe storms what would it be like if I flew?  Once I can get back to a therapist and learn to wrap I'll feel better about it.  Until then I've grounded myself.  Yell  It's not worth it to me.  

Thanks again, Binney for posting that video.  It was really, really helpful.  Smile 

And thank you to all of you who took the time to respond.  You all are my LE lifeline.   

BMX 2/2010 with immediate reconstruction. Exchanged with silicone implants 7/2010. Diagnosed with LE 9/2010 Dx 9/2009, DCIS, Stage 0, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Mar 9, 2012 05:57AM lvtwoqlt wrote:

Dawne, yes the higher elevation has less pressure on our body, the less pressure the more we are likely to swell, that is where the compression garments come in play, they help make up the pressure difference on our skin as we go higher in elevation. as an example, I live at 1250 feet above sea level, if I travel to Boone (18 miles North) where the elevation is 3300 feet above sea level, I do notice my hand may swell more.


Women are like tea bags, we don't know how strong we are until we were thrown into hot water. Eleanore Roosevelt Diagnosed ADH Feb 2005, ADH Sept 2006 Surgery 2/11/2005 Lumpectomy: Left Surgery 9/9/2006 Lumpectomy: Right Hormonal Therapy 10/11/2006 Dx 4/27/2007, DCIS, Stage 0, Grade 1, 0/7 nodes Surgery 5/31/2007 Mastectomy: Left, Right
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Mar 9, 2012 07:18AM julee_stayin_strong wrote:

I have punched myself probably 10 times!!! LMAO I feel like an idiot!!!

Dx 5/18/2011, IDC, 3cm, Stage IIIA, Grade 2, 12/20 nodes, ER+/PR+, HER2- Surgery 6/17/2011 Mastectomy: Right Chemotherapy 7/11/2011 AC + T (Taxol) Radiation Therapy 12/19/2011 Breast, Lymph nodes Hormonal Therapy 2/14/2012 Surgery 11/6/2012 Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Surgery 3/19/2013 Reconstruction (right) Surgery 7/18/2013 Prophylactic ovary removal
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Mar 9, 2012 07:25AM julee_stayin_strong wrote:

Does anyone know how I can get help buying sleeves? I've called the American Cancer Society, and a couple other places and they say they are out of funds. I'm on state insurance and they don't pay for sleeves. The first set i got cost me $210. Does anyone know of a website i can get them cheaper? Also, i need a gauntlet with fingers. i heard of one i think it's called Farrow??? that you can cut the fingers to size. does anyone know about those? Sorry, so many questions. Considering Lymphadevas also, can i get some opinions on those? Thank you all ahead of time!!!Wink
Dx 5/18/2011, IDC, 3cm, Stage IIIA, Grade 2, 12/20 nodes, ER+/PR+, HER2- Surgery 6/17/2011 Mastectomy: Right Chemotherapy 7/11/2011 AC + T (Taxol) Radiation Therapy 12/19/2011 Breast, Lymph nodes Hormonal Therapy 2/14/2012 Surgery 11/6/2012 Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Surgery 3/19/2013 Reconstruction (right) Surgery 7/18/2013 Prophylactic ovary removal
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Mar 9, 2012 04:13PM carol57 wrote:

Julee, A while back, I did a google search to see if I might find LE garment resources around the country.  I found about thirty, and just by googling. I just checked my list, and unfortunately none are funds specifically in Oregon, but that does not mean this does not exist.  One strategy is to call your regional Susan G. Komen for the Cure chapter and ask them if they have funded any lymphedema clinics or hospitals for compression items and LE treatment.  When I was searching, I found quite a few press releases announcing these awards.  One LE clinic in my area has been funded to help 30 or so women each year.

Also check out the NLN's garment fund, which has a 'catch' to it, but still worth investigating. The catch is that you need to apply for garment assistance through a clinic or therapist who is a NLN member, so that's the first question to ask of your therapist.

And here's a long shot: in Washington, MultiCare Health Foundation has a Breast Health Assistance Fund.  By any chance is this a multi-state organization that might also be affiliated with a hospital or LE clinic in your area?

I really was surprised to find evidence of garment and LE help in 21 states, plus several resources in Canada and in Australia.  I did not verify any of it by calling or emailing, just made a list of what I found.  As you learned, some resources may be out of funding.  But I think that hospitals and other providers may have resources they do not generally advertise--worth making a lot of phone calls, no?

I posted my garment-fund list online, through Google Docs.  It is visible to anyone with this link:

If you find a resource in Oregon, (and I hope that you do!!), post it here and I'll add it to the list I'm keeping. Also, anyone looking at this who checks out the list--if you find a source does not exist or is out of funding, post or PM me with the info and I will update the list.

Good luck, really is mortifying how expensive the sleeves and all the other LE claptrap are.


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Mar 9, 2012 09:44PM Huskerkkc wrote:

Hi ladies,

I don't think I've posted here before but I read this thread almost daily. I was diagnosed with LE right before Christmas and have been going to OT ever since. My therapist is not LE certified, but has lots of training and is the closest to a specialist in my area. I think she is great. I had a lumpectomy a year ago, with 3 nodes removed-all negative. My BS said LE was not a risk for me. In fact, I had seen him just 3 weeks before I went to see OT. Originally I thought I just needed some stretching and strengthening (which I did), but soon discovered the benefits of the massaging and stretching. My LE is in my breast, not arm, near the surgical site, as well as in the armpit. I also had pain underneath the breast, probably from lymph pooling there as it tried to reroute. I don't wear a sleeve, but have quit wearing a bra and started wearing tight camis. I finally got a compression cami today, but don't know if I will keep it. A bra is on backorder.

I just about ended OT, but felt like I still needed help with the stretching. I can do the massaging myself, although not for 15-20 minutes like they do! I started going once a week instead of twice a week. Last week after my appointment I felt a cord or band in that sore spot under my breast and pointed it out to the OT. She was very surprised and said she had not ever seen cording in the breast, only under the arm but was certain that's what it was. she did some stretching and pushing and pulling and after about 10 minutes there was a slight pop. Didn't feel it, but could hear it. Honestly, I thought it was her hand or knuckle! But the tightness eased up immediately. Tonight i am still sore (from all the pressure I think) but the cord seems significantly reduced. I had a hard time even finding it.

I guess I am just wondering if others have experienced cording in the breast and if so, how it was treated. Will it go away? Is there anything I can do myself? I was so relieved it wasn't a lump (I was pretty sure it wasn't, but geez-there was definitely something there) that I didn't think to ask some of these questions.


Kristy “If we had no winter, the spring would not be so pleasant: if we did not sometimes taste of adversity, prosperity would not be so welcome.” - Anne Bradstreet Surgery 2/3/2011 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 3/17/2011 Cytoxan (cyclophosphamide), Taxol (paclitaxel)
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Mar 12, 2012 07:43AM onward wrote:

Good Morning All. Yesterday my oldest son Max asked his girlfriend to marry him and she said YES! Now how can I post a picture of her?????

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Mar 12, 2012 08:08AM kira wrote:

Kristy, no one seems to have answered you: you can definitely have cording in a breast, it's usually called "Mondor's disease", and the slight pop likely means that the cord snapped, and it should give you complete relief. You don't try and deliberately break cords, especially early on, but if they pop in the course of mild treatment, it should feel better.

I'm going to put in the link to AWS: 

Also, try searching the forum for mondor's disease.

It's been a few days, are you still sore? 

Onward: I use photobucket and put the link in the green window icon. Congratulations! 


Knowledge is the antidote to fear, Ralph Waldo Emerson Dx 5/10/2008, IDC, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Mar 12, 2012 09:35AM carol57 wrote:

Onward, Wow, what a wonderful report!  Isn't it fabulous when such great life events focus our attention on a wonderful future, instead of the crappy past that brings us all together here?  Bask in it!


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