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

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

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.

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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Sep 9, 2019 12:10PM - edited Sep 9, 2019 12:12PM by edj3

Oh that's pretty!

Here's the one I wore today:


Dx 4/9/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Surgery 5/6/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 6/3/2019 Whole-breast: Breast Hormonal Therapy 9/23/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 9, 2019 05:14PM - edited Sep 9, 2019 06:44PM by Vargadoll

Edj3- that's beautiful!! Is it a Lymphedivas? I check the website everyday for the discount seconds. Ya never know what you will find! The sleeves aren't compromised in structure it's just a dye lot issue or possibly a slip in the pattern. So far all of mine have been unnoticeable! And they are $32.50- $44.00 a nice saving!

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Lumpectomy: Right Radiation Therapy 4/12/2017 Breast Hormonal Therapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Sep 9, 2019 06:10PM edj3 wrote:

No, it's Juzo. I liked the Lympediva ones a lot but they don't come in the size I need (super small, long length). I was bummed :(

Dx 4/9/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Surgery 5/6/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 6/3/2019 Whole-breast: Breast Hormonal Therapy 9/23/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 9, 2019 06:46PM Vargadoll wrote:

Juzo is the one in should be wearing with all the lifting I do. I only wear the lymphedivas when I'm not pushing my girl or lifting her. 😜

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Lumpectomy: Right Radiation Therapy 4/12/2017 Breast Hormonal Therapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Sep 9, 2019 09:03PM mammalou wrote:

I like your sleeve! I am going to have to get more brave. I’ve contemplated wearing a sleeve on each arm so it just looks like a long sleeve shirt. Lol!

DX 12/2018 ADH right breast Dx 1/11/2011, IDC, Left, 3cm, Stage IIIB, Grade 2, 1/9 nodes, ER+/PR-, HER2- (FISH) Surgery 1/11/2011 Lumpectomy: Left Chemotherapy 3/2/2011 AC Surgery 5/13/2011 Mastectomy: Left; Reconstruction (left): Tissue expander placement Radiation Therapy 6/16/2011 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 7/29/2011 Arimidex (anastrozole), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/13/2012 Reconstruction (left): Silicone implant Surgery 6/26/2013 Reconstruction (left): DIEP flap
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Sep 13, 2019 07:15PM mammalou wrote:

I just received my sleeve in the mail. How tight should this be? Is it ok to see indentions where the band is

DX 12/2018 ADH right breast Dx 1/11/2011, IDC, Left, 3cm, Stage IIIB, Grade 2, 1/9 nodes, ER+/PR-, HER2- (FISH) Surgery 1/11/2011 Lumpectomy: Left Chemotherapy 3/2/2011 AC Surgery 5/13/2011 Mastectomy: Left; Reconstruction (left): Tissue expander placement Radiation Therapy 6/16/2011 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 7/29/2011 Arimidex (anastrozole), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/13/2012 Reconstruction (left): Silicone implant Surgery 6/26/2013 Reconstruction (left): DIEP flap
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Sep 14, 2019 08:30AM HersheyKiss wrote:

Lou, the sleeve should be a snug fit.

My Juzo sleeve has a wristband construction. It sometimes leaves a slight depression in the skin there. My LympheDIVA sleeve has no wristband, so there is not a depression.

Dx 3/1/2017, ILC, Left, 2cm, Grade 1, 3/16 nodes, ER+/PR+, HER2-
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Sep 14, 2019 01:04PM MinusTwo wrote:

But ... it's a good questions. I don't think a sleeve should leave an indentation ?????

My Juzos have a band at the top & none at the wrist. Occasionally I'll have a depression on my thumb from the gauntlets if I use my hand too much.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Oct 10, 2019 09:17PM mammalou wrote:

I wore my nighttime garment for the first time last night. It was difficult to get on! I woke up with what looked like protruding veins running up and down my arm. Is that how it should look

DX 12/2018 ADH right breast Dx 1/11/2011, IDC, Left, 3cm, Stage IIIB, Grade 2, 1/9 nodes, ER+/PR-, HER2- (FISH) Surgery 1/11/2011 Lumpectomy: Left Chemotherapy 3/2/2011 AC Surgery 5/13/2011 Mastectomy: Left; Reconstruction (left): Tissue expander placement Radiation Therapy 6/16/2011 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 7/29/2011 Arimidex (anastrozole), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/13/2012 Reconstruction (left): Silicone implant Surgery 6/26/2013 Reconstruction (left): DIEP flap
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Oct 13, 2019 09:22AM HersheyKiss wrote:

Lou, I've not experienced something like you describe. My nighttime garment is snug, but not nearly as snug as a daytime sleeve.

Perhaps snap a picture or two and send to your LE specialist for his/her advice.

Dx 3/1/2017, ILC, Left, 2cm, Grade 1, 3/16 nodes, ER+/PR+, HER2-
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Oct 13, 2019 08:51PM cwins1218 wrote:

Hi everyone,

I'm so emotional..I never knew about lymphedema. I had a crap BS. My plastics team has been great but they didn't take the nodes, my BS did. She seemed to be upset that I decided to have a bmx with a DCIS stage 0 diagnosis. But I decided it after 6 months of taking tamoxifen, doing a ton of tests and wanting the most absolute assurance I could get to be cancer free. She really focused on telling me how bad a bmx would be over a lumpectomy. All the while I could have had lymphedema either way and she never once explained this possibility to me. and now I believe I do have it! I thank you all..reading these posts have helped me. She took close to 10 on one side and 3 on the other. I chose to have the DIEP surgery and now after my second phase, I'm noticing my arms swelling, my stomach swelling. ripples and tightness. I go to PT tomorrow to talk about a LE treatment. But it was my plastics team that referred me not my BS!😡😡😡

If anyone has any suggestions, I'm taking them all. I have a vacation to fly on Novembet 13th. Should I start researching compression garments again?

Thank you in advance,

Crystal

Dx 2/27/2019, DCIS, Right, 5cm, Stage 0, Grade 2, 0/12 nodes, ER+/PR- Targeted Therapy 3/3/2019 Surgery 6/2/2019 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery Mastectomy: Left, Right; Reconstruction (left): DIEP flap
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Oct 13, 2019 10:39PM MinusTwo wrote:

cwins: You're not the lone ranger. Most docs get only 15 minutes of education in med school about LE. I can't think of one person I've "met" on these threads who was informed or warned ahead of time.

My BS, my PS & my MO all said pooh pooh - seldom happens, very rare couldn't be, not to worry. The one who understood and get me to a competent, trained LE therapist was my radiation oncologist.

I never fly without sleeves and gauntlets and a Belisse Compression Bra. At home I wear a WearEase Sydney Bra 24/7. It's my goal that the LE doesn't spread any further. So far it's working.

If you haven't seen the thread below, it's great information & has good tips.
Good luck at PT.

https://stepup-speakout.org/

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Oct 13, 2019 11:07PM cwins1218 wrote:

Thank you MinusTwo, this is crazy to think that this isnt something told to a patient the minute they start talking about removing the lymph nodes. Which they immediately told me I had to do regardless of my elected surgery. Some, a few or all can result in this. But moving on....

Thank you for the link and I'm reading it now! I will be getting those items. which I'm sure the PT LE specialist will suggest. Then my doctor may figure out it is why I am so uncomfortable.

Crystal

Dx 2/27/2019, DCIS, Right, 5cm, Stage 0, Grade 2, 0/12 nodes, ER+/PR- Targeted Therapy 3/3/2019 Surgery 6/2/2019 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery Mastectomy: Left, Right; Reconstruction (left): DIEP flap
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Oct 14, 2019 08:10AM JO-5 wrote:

Minus,

Can you tell me what you know about the sizing for the Wearease Sydney? I don't like the plunge because I have a deep divot in that area with a thin skingraft . (UGLY!) but would trade off on that for a bra that had back and high underarm compression.

I go to a state of the art bra fitter and nothing covers this loaf under my right arm and no compression on the back.

I am unable to wear the regular compression bras. I have 2 and cannot stand them.)

Would the wearease accommodate my prosthesis on the right? Is this bra a slip on? I have a hard time with slip ons.

Thanks for any info you can guve. I have bags full of bras that I can't wear and tired of buying more.

Thanks

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Oct 14, 2019 10:50AM MinusTwo wrote:

JO-5 - Well to start, yes the Sydney bra is a 'pull on', but you can step into it and pull up. I did that when I wasn't supposed to move my arms up over my shoulders. This site has a video about donning garments. https://www.wearease.com/

There is a 'pocket' for a prosthesis, but since I have implants I've never tried them. My PT therapist was particularly pleased with the high back & under arms.

The company representatives are great about answering questions and their return policy is very generous. Give them a call 866-251-0076 and discuss your particular needs. They might suggest other styles that might work for you. Disclaimer - I have no connections with the company.

That said, I wear a Belisse Bra when I fly because that's what I started out with in the beginning. It's heavy & confining with zippers & hooks & velcro, and I can hardly wait to pull it off when the hour post touch down is over. I'm sure there are others out there that work as well (maybe even a WearEase model), but I tend to be a creature of habit.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Oct 14, 2019 02:07PM JO-5 wrote:

Thank you. I will have to look at it some more.

My big problem is what we ladies on the Lat flap thread call the "loaf" under the arm where they tunneled the back muscle. Mine never went all the way down and is painful. Once in a while the LE bothers that as well.

I did not have reconstruction....just the muscle lump from my back. It is a very difficult situation to work with. No one understands it unless they see it.

Joanne


Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Oct 14, 2019 06:38PM MinusTwo wrote:

Jo - I can imagine your frustration. Hope you find something that helps.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Oct 28, 2019 11:56PM mammalou wrote:

This night time padded garment is ucomfortable! I'm feeling very overwhelmed that I have to wear all this stuff for the rest of my life.

DX 12/2018 ADH right breast Dx 1/11/2011, IDC, Left, 3cm, Stage IIIB, Grade 2, 1/9 nodes, ER+/PR-, HER2- (FISH) Surgery 1/11/2011 Lumpectomy: Left Chemotherapy 3/2/2011 AC Surgery 5/13/2011 Mastectomy: Left; Reconstruction (left): Tissue expander placement Radiation Therapy 6/16/2011 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 7/29/2011 Arimidex (anastrozole), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/13/2012 Reconstruction (left): Silicone implant Surgery 6/26/2013 Reconstruction (left): DIEP flap
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Oct 29, 2019 06:42AM InnaB2018 wrote:

mammalou, I totally empathize with you! I hate it so much, that go next week for lymphedema surgery consultation. Even if there’s 50/50 chance to get rid of this nightmare, I’ll take it.

Dx 3/26/2018, IDC, Right, 3cm, Stage IIA, Grade 3, 1/18 nodes, ER+/PR+, HER2- Surgery 4/24/2018 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/1/2018 AC + T (Taxol) Radiation Therapy 10/7/2018 3DCRT: Breast, Lymph nodes, Chest wall Surgery 5/21/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 5/22/2019 Prophylactic ovary removal Hormonal Therapy Arimidex (anastrozole)
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Oct 29, 2019 09:10PM mammalou wrote:

innaB2018 I’ve wondered how bad do you have to be before they will consider that. It would be worth it.

DX 12/2018 ADH right breast Dx 1/11/2011, IDC, Left, 3cm, Stage IIIB, Grade 2, 1/9 nodes, ER+/PR-, HER2- (FISH) Surgery 1/11/2011 Lumpectomy: Left Chemotherapy 3/2/2011 AC Surgery 5/13/2011 Mastectomy: Left; Reconstruction (left): Tissue expander placement Radiation Therapy 6/16/2011 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 7/29/2011 Arimidex (anastrozole), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/13/2012 Reconstruction (left): Silicone implant Surgery 6/26/2013 Reconstruction (left): DIEP flap
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Nov 7, 2019 08:35PM Vargadoll wrote:

would live to hear the outcome of the appointments! I'm in compression 24/7. I've gotten used to the night garment the cover that goes with it does not stay closed good witch gets a little annoying. And until I figured out where something over top of it it was wearing holes in my sheets!

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Lumpectomy: Right Radiation Therapy 4/12/2017 Breast Hormonal Therapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 16, 2019 02:03AM VLH wrote:

Vargadoll, I found your note when I did a search on the lymphedema pump and Velcro. My chest garment is fine, but I've had to resort to flinging myself into bed with my arm down and my legs as straight as possible to keep my leg garment in place. Lymphedema is no laughing matter, but my sometimes dark sense of humor has me envisioning a huge, brown penguin flopping about.

Do you recall how long you'd had your pump when Tactile agreed to replace your garment? I recall the pump proper having a 5 year warranty, but no mention was made about Velcro failure issues. Thanks!

Lyn

Dx 5/20/2016, IDC, 2cm, Stage IIB, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/10/2016 AC + T (Taxol) Radiation Therapy 9/5/2017 Whole-breast: Breast
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Nov 17, 2019 07:26AM Vargadoll wrote:

Lynn, I had it about a year and half. My LE therapist told me to call that they would replace it and it my surprise they did! They just wanted me to mail my old pieces back to them. They provided the postage to!

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Lumpectomy: Right Radiation Therapy 4/12/2017 Breast Hormonal Therapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall

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