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 07:56PM

Posted on: Oct 14, 2010 07:56PM

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.

REALLY????????????????????

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 4, 2012 10:29AM kira wrote:

I have a vague recollection that there are lymphatics in the periosteium of the bone--I learned that when I broke my hand and it swelled up like a balloon.

I'm sure there's overlap.

My hand hurts when the weather changes, but my ankles always swelled on planes before I developed overt LE.

KS1 and Tina, LE sure does wear us down, and it's the last thing we want front and center in our lives.

Your personal cheering section.

Kira

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 4, 2012 04:50PM Purl51 wrote:

I went to a Lymphatic Research Symposium yesterday.  Two links:  www.lymphaticresearch.org and google "Stanford Lymphatic" to find the latest news under the Lymphatic & Venous Disorders.  Dr. Stanley Rockson spoke and was very optimistic about the next 2-3 years.  Progress in this field that was slow decades ago has spike dramatically in recent years due to awareness and funding.  Just thought I'd share.

Purl Dx 4/13/2011, IDC, 1cm, Stage IIB, Grade 2, 2/13 nodes, ER+/PR+, HER2- Surgery 4/26/2011 Mastectomy: Left Chemotherapy 6/9/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/26/2011 Breast, Lymph nodes Hormonal Therapy 1/4/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 9/7/2014 Femara (letrozole)
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Mar 4, 2012 05:42PM kira wrote:

Purl, any details? He's given us "teasers" about medication, biomarkers and genetics--we're waiting for those to be published.

I saw the LRF had a symposium in Santa Barbara--what a great place!

Kira

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 4, 2012 10:46PM binney4 wrote:

Purl, thank you!Smile And I'm glad the news was so encouraging. Some researchers are calling this the "Renaissance of Lymphatic Research." Better late than never!Undecided

Onward!Cool
Binney

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Mar 4, 2012 11:23PM 3jaysmom wrote:

i too, don't know HOW it works, but my le is def. effected by barometric changes.. my dr. tells me im WAY better than the weatherman.. lol

  im sorry so many of you have all these bad storms, etc to deal with.. wrapping helps me, but i, like Binney have "compression" sensitivity, so its tricky..

  we'll see if gottfreid takes my fitters questions seriously, and adds "dotd" on the top band of my gloves..

   Kira: do you find juzp or jobst softer/more effective for your hand?? gottfreid i use for bad flares, they help more then, but i forgot what kind I had that i lsot.. they were juzo; or jobst??? 3jays

3jaysmom Chemotherapy 4/20/2009 Dx DCIS, 2cm, Stage IIB, 1/27 nodes, ER-/PR+, HER2-
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Mar 5, 2012 12:46AM LuvLulu07 wrote:

Greetings All -

I haven't posted here in awhile, but have read about the storm effects on LE, very interesting.  

I am not easily finding information on what I think might be axillary web syndrome.  I've had cording in the armpit since surgery - it looks like 4 guitar strings only in the armpit area.   

The PT showed me a massage technique to help with this (firmly pressing on the area)  and a "bye bye" wave, continuously flexing and extending the wrist while lifting the arm up overhead.  Neither of these techniques seems to be helping.  I do MLD twice a day.  Is there anything else that can be done to help with this?   Does getting rid of cording help reduce swelling?  

Nov. 2011 NSS BMX direct to implants Tamoxifen, Zoladex Dx 9/27/2011, IDC, Left, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2-
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Mar 6, 2012 07:51AM ktym wrote:

Just had to stop in and thank Kira and Binney for the step up and speak out site and especially the essential information for medical providers.  Crucially handy for me this morning.  I know the hours and help here must cost a lot of time and emotions, but, thank goodness for you guys.

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Mar 6, 2012 08:27AM Leah_S wrote:

I have a different type of question. Is there any other company that makes patterned sleeves/gauntlets like Lymphadivas? They used to have a black lace pattern one but don't seem to have it now so I was wondering if it was available elsewhere.

Thanks!

Leah

Dx 11/3/2008, IDC, 1cm, Stage IV, Grade 3, 6/17 nodes, ER+/PR+, HER2-
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Mar 6, 2012 09:41AM binney4 wrote:

Leah, they do have this one:

http://store.lymphedivas.com/store/pc/viewPrd.asp?idproduct=2982&idcategory=29

There's another company called Slice of Fashion that makes a black lace sleeve COVER (not a sleeve, but it's to wear over a sleeve). I have reservations about sleeve covers because we need to be careful not to add compression, especially at the top to hold it up -- but if you check it out with your therapist it should be okay:

http://www.sliceoffashion.com/html/products.html

Black lace, huh?!Kiss Very nice!
Binney

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Mar 6, 2012 09:46AM kira wrote:

Kate, doing the SUSO site was actually very therapeutic for me--it helped me learn and get the info in one place. I'm glad it is useful. I was invited to help out by Jane and Binney and what a gift that was/is.

I got an email from someone very high up in the LE world asking for AWS info from the site, and that lets me know that we did pull together some important information. 

And there's always more work to be done. 

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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