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

Forum: Lymphedema —

Lymphedema is swelling that can develop in the arm, hand, breast, or torso as a side effect of breast cancer surgery and/or radiation therapy. Lymphedema can appear in some people during the months or even years after treatment ends.

Lymphedema usually develops slowly, and you may feel an unusual sensation — such as tingling or numbness — that comes and goes before any visible swelling occurs. Other symptoms include achiness, feelings of fullness or heaviness, puffiness or swelling, and decreased flexibility in the hand, arm, chest, breast, or underarm areas. Tell your doctor if you experience any of these symptoms. Early treatment of lymphedema is important.

Learn more about how to lower your risk of lymphedema and how to manage it if you've been diagnosed.

Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

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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Dec 23, 2020 10:38PM Binney4 wrote:

Hi, HomeMom,

Tactile is the name of a company that makes the Flexitouch lymphedema pump system, a kind of mechanical lymphatic drainage aid that can augment or take the place of at-home Manual Lymphatic Drainage. It doesn't replace other lymphedema treatment, though, such as the use of compression garments or layered bandaging, exercise, or careful skin care. Tactile makes pump systems for all kinds of lymphedema, not just arms and trunks. They work by donning thick garments attached to the pump, that inflate and deflate in the order and timing that you might use yourself when you're doing self-massage. The Tactile sleeve is the garment that's used for pumping the arm. It's not something you'd wear during the day or night, just the sleeve (and chest area) garment you use for the hour or so that a mechanical pumping session takes. It can be relaxing and it generally works well, as long as you don't give up on the other aspects if your lymphedema self-care. Some insurance covers this technique, and you can ask your lymphedema therapist if it might be workable for you. Here's the Tactile website:

https://www.tactilemedical.com

Hope that helps. Hugs,

Binney


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Dec 24, 2020 11:41AM BlueGirlRedState wrote:

HomeMom - the tactile website has better pictures than I could take. https://www.tactilemedical.com/products/flexitouch...

The garments sent depend on what the healthcare provider says about your lymphedema. You could try calling them ahead of time for suggested garments, estimated cost etc. My garmet includes the chest and right arm, as well as "shorts". The pump is sequential and programmed for your specific needs, including pre-set pressure. The program has its own timer and shuts off when finished. It seems much more gentle than the previous device. I hope to contact a "trainer" in my area after the first of the year, because I find the shoulder area very hard to "fit" or at least it does not feel like it is really fitting. These are not cheap. I just got the insurance statement, and because I was at the catostrophic level for what I had already paid out of pocket when ordered., insurance picked up almost the entire cost. My cost estimate was $750, but the actual was about $350. I think they billed the insurance $7,000. I usually listen to the radio or watch a video while using, I found reading awkward. I usually use both the arm and shorts and recline. If I just use the arm I can sit up and read.

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Jan 13, 2021 11:22AM HomeMom wrote:

Thanks ladies!

Dx 3/31/2014, IDC, 2cm, Stage IIB, Grade 1, 3/29 nodes, ER+/PR+, HER2- Surgery 4/15/2014 Lumpectomy: Left Surgery 5/6/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 5/30/2014 AC Chemotherapy 7/25/2014 Taxol (paclitaxel) Radiation Therapy 10/16/2014 Hormonal Therapy 12/15/2014 Arimidex (anastrozole)
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Jan 14, 2021 01:06AM cwins1218 wrote:

Good evening!

I just logged on after a long while because whenever I'm feeling like I need answers..I always come here. This forum is a true life saver because I was beginning to think I was crazy with my LE. I just received my Tactile machine. It is working good so far. I also have questions about LE of my left breast and while my LE provider and my Masectomy garment specialist both agreed I have LE in my breast..I did not get the same confirmation from my Plastic Surgeon yet because he believes it is PMPS which I'm being treated for. I think it is separate issues.. I definitely have LE in my arm, back and under arm (sooo uncomfortable) which is why my machine was paid for. And so I also think it is in my breast too. the LE provider felt she didn't want to put me through the additional tests since she approve the machine. But sometimes the machine doesn't always help. That's why I cam to the forum.. I also just started about a week ago.

I also feel like alcohol aggravates LE...but thought I was crazy about that is well. In relationship to LE I wonder if anyone has experienced: weakness in the arm and shoulder and fullness? Loss of strength-- is it because od the sleeve or LE. or both? My left breat..always feels heavy. I have diep flap transfer so I even thought my tissue had gotten bigger but I think it's LE-- Has that happen to anyone? I do get temporarily relief from the machine and wearing a compression bra and sometimes my prosthesis because it makes everything super tight.. However that can't be normal right and who wants to wear that all the time. My right breast..barely even notices its there (completely chill compared to my left)

Thank you for reading in advance! Any tips, advice, always helps.

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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Jan 14, 2021 10:21AM JO-5 wrote:

Hello Ladies,

I have a Lympha Press LE machine. It is regular size and barely used. I would love to give it to someone that could use it but I read the rules on BCO and we are not allowed to charge shipping and handling. I cannot afford that because it is heavy. I do not know how much it would cost to ship it.

Do any of you know where I could donate it. It is in perfect condition and worked great for me. I can not use it because of the graft in my chest.

I have not been able to find any place to donate it.

Here are the pics of what it is.

JO-5


IDC 04 Stage 1 Grd 3 no nodes Lumpectomy rads plus boosts ER+PR+HER- AI 5 yr 2014 secondary angiosarcoma from rads lumpectomy recurrence 1 yr Mastectomy with lat flap 1/2 flap went necrotic skin graft to center of chest.
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Jan 14, 2021 12:24PM KatyK wrote:

I have a question about lymphedema. I had a lumpectomy andtwo sentinel nodes removed fifteen years ago. I recall a brief conversation with a doctor about lymphedema but basically it came down they were not that concerned about it with me for a variety of reasons. So I was never concerned and I have no issues, I have had numerous IVs, blood pressure and blood draws on that arm with no ill effects. I just started a weekly IV chemo (no port) and the nurse wanted to use the opposite arm (one that did not have surgery) due to lymphedema concerns. I was surprised as in fifteen years not one medical person has brought this up. I can’t say I feel very concerned as I’ve had no problems in fifteen years but has anyone out there developed lymphedema after that many years? Any advice for me, should I be concerned?

She believed she could, so she did. Dx 7/2017, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Jan 14, 2021 12:31PM MinusTwo wrote:

Yes I know people who have developed LE at 25 years out. You are ALWAYS at risk. Most docs don't have any knowledge about LE. Hooray for the nurse who is pro-active. Take a look at the link below for more info.

https://www.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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Jan 14, 2021 12:32PM MinusTwo wrote:

Jo - sorry I don't, but I sure hope someone has info. Looks like a great product.

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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Jan 14, 2021 07:02PM BlueGirlRedState wrote:

cwins1218 - lymphedema really sucks. I just started using the tactile about a month ago for the right arm. Sometimes I use the "shorts" that came with it as well. I was using a different device that just had a sleeve for the arm. the Tactile is much more gentle, perhaps since it is sequential ? I wear compression glove and sleeve. I think stiffness in hands is from Arimidex. But clumsiness has shot through the roof, and I keep dropping things. Not sure if the typos are from too many breadcrumbs in the keyboard or my stiff hands and wearing glove. Your comment about alcohol. I wonder if it does make it worse. I went for 9 months or so without any, and recently started having a glass of wine or a beer. My lymphedema does seem to be getting worse or at least changing. Doing some tests to see if something else is going on. Asked my lymphatic therapist if the stiffening/hardening in neck adjacent to affected arm was cording, and she said No. I often read while using the pump, and have found a wrist support sleeve for the left hand very helpful since it is awkward to read.

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Jan 15, 2021 05:05AM Rah2464 wrote:

Jo what about trying to contact the step out speak up organization? Surely someone there could point you to a donation site. Or perhaps you could contact an area hospital that has a lymphadema specialist? I, too would hate to see that equipment go unused.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 15, 2021 10:15AM HersheyKiss wrote:

Jo, the local chapter of the American Cancer Society may have some suggestions as well. One of their volunteers might even come pick up the machine from you.

Dx 3/1/2017, ILC, Left, 2cm, Grade 1, 3/16 nodes, ER+/PR+, HER2-
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Jan 15, 2021 03:03PM Binney4 wrote:

Jo, I donate equipment and LE gear I don't use to my therapist's office, and they always know of someone who can use it. Or in some cases they keep it to show patients what's available. Ask around at any qualified LE therapists' office and I'm sure you'll find eager takers. Then again, it can be hard to find a qualified therapist sometimes, yes?!

KatyK, kudos to the oncology nurse who warned you about using that at-risk arm! It's always heartening to hear about healthcare providers who are aware of lymphedema risk and willing to take the steps to prevent it. Though most lymphedema is diagnosed within the first couple of years after treatment, the risk is for life, and it's a rough surprise when it comes along later. Be well!

Hugs,
Binney

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Jan 15, 2021 10:43PM cwins1218 wrote:

Thank you for sharing...I'm sorry you are going through this. Do you ever see a LE therapist?

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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Jan 17, 2021 12:39PM BlueGirlRedState wrote:

If you see a lymphatic therapist they might be able to help donate the device. Mine said that they would be able to santize some models and get them to someone who needs them.

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Jan 17, 2021 01:58PM JO-5 wrote:

Thanks everyone. I am going to call the LE therapist and see if she will take the LE pump. I will also ask my dr. Surely someone can use it.

Joanne

IDC 04 Stage 1 Grd 3 no nodes Lumpectomy rads plus boosts ER+PR+HER- AI 5 yr 2014 secondary angiosarcoma from rads lumpectomy recurrence 1 yr Mastectomy with lat flap 1/2 flap went necrotic skin graft to center of chest.
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Jan 17, 2021 02:43PM MinusTwo wrote:

JO - when my Dad died I found that Doctor's Without Boarders was one of the few places that would take used "medical equipment".

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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Jan 17, 2021 04:09PM JO-5 wrote:

Minus,

I looked them up....only taking money donations and found none around me at all. Maybe because of the covid 19. I will talk to my dr and therapist and if they can't take it I will probably just trash it. Such a shame, but we're downsizing and I don't want it laying around.

The place where I used to get my bras and prothesis used to take those things for women that can not afford them and have no insurance. They are not allowed to take them any more and that started long before covid. I don't understand it but that's the way it is.

Joanne

IDC 04 Stage 1 Grd 3 no nodes Lumpectomy rads plus boosts ER+PR+HER- AI 5 yr 2014 secondary angiosarcoma from rads lumpectomy recurrence 1 yr Mastectomy with lat flap 1/2 flap went necrotic skin graft to center of chest.
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Jan 18, 2021 12:41PM BlueGirlRedState wrote:

This a post from lymphatic network, maybe already posted elsewhere. One woman's letter to AMA. I will also paste in case URL does not work. Need to keep pushing for better prevention, monitoring, diagnosis, and treatment. Need to keep sharing stories, https://lymphaticnetwork.org/news-events/a-letter-...

A letter to the American Medical Association (AMA) from Paula Tebeauemail sharing button

Dear Dr. Madara,

I recently joined the LE&RN community. It's been a great place for me for access education and advocacy for lymphatic diseases. I'm writing to you to share my personal story and experience with lymphedema with the sincere hope that it helps to bring about change.

In 2017, at the age of 41, I was diagnosed with stage 1 breast cancer for which my treatment was a partial mastectomy and radiation. What I didn't know then was the worst part of cancer treatment was going to be that it left me with lymphedema. Many months after my cancer treatments finished my breast was swollen and pitted. I remembered having seen a physical therapist shortly after surgery who gave me signs to look out for lymphedema in my arm, she was also our support group leader. I called her for advice and she said I had lymphedema in my breast and that I needed to contact my health care provider for diagnosis to get started on PT. It was quite shocking to me that I had it in the breast that was treated with cancer, I had no idea that was even possible and I was only ever worried about getting it in my arm. That visit snowballed and threw me into a life with lymphedema. I ended up with 3 breast infections in the early stages of my lymphedema diagnosis, I underwent several screening procedures, a biopsy, and many rounds of antibiotics during a time in which I was still trying to get over the shock of having had cancer.

I was lucky that I found a good physical therapist who was trained in lymphedema to help me get to a stable place after all the infections, but it remains something I struggle with daily. My PT gave me exercises and taught me how to do my own lymphatic drainage, I don't see a PT regularly now as I have limited health insurance for PT and I save it for when I really need it. I know how to manage it mostly myself and I know the issues I need to watch for and hope that I catch them in time. I wear a compression bra which is not covered by insurance and is terribly uncomfortable. I have pain on a regular basis, in my breast, and rib cage, but still lymphedema is not in my medical chart, my PCP does not know much about it and it's seen as a non-issue. Just the other day when I talked to my oncologist about the pain I have due to lymphedema he replied with just a "Yeah, that sucks."

I work in the field of human subjects research compliance and I'm disappointed in how little research there is about lymphedema, but even more so about lymphedema of the breast. I'm adding my voice now as I also believe it can help lead to new medical standards in the treatment of lymphatic diseases and shine a light on the need for research. Please make lymphedema, lipedema, and other lymphatic diseases a priority for the medical profession.

Sincerely,
Paula Tebeau

This message was also on the site.

This is how change happens. I invite you to read Paula's powerful words, published on LE&RN's website, regarding her lymphedema treatment and her demands for change that she sent to AMA CEO & Executive Vice President, Dr. James Madara: james.madara@ama-assn.org.

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