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Topic: Kicking LE's butt!! Exercise & Self Care Log

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

Posted on: Mar 7, 2012 07:32PM

Tina337 wrote:

Let's use this thread to post the exercise and methods of self care we are practicing each day to keep our bodies strong and our LE at bay. After experiencing a flare in my arm when I hadn't been as diligent in caring for my truncal LE, I am motivated to begin exercising regularly, performing MLD daily, and wearing prescribed compression garments. Rather than fall down on the job and become overwhelmed by this chronic condition, I want to challenge myself to kick LE's butt into a small, manageable corner! I started today. Here's what I did.

I still have my arm and hand wrapped, and I am also wearing my compression tank with round swell spots on each side in the underarm area 24/7 as per my LE therapist's instruction. This afternoon I did the entire Lebed DVD. Woohoo! It's a start. Yes, that DVD is still creepy! I'll have you know I continued with the exercises even when my husband unexpectedly walked into the room. I started making fun of the DVD, which was kind of fun, so I continued for the rest of the program taunting and making fun of the weird instructions, cheers, and "dancing!", etc. It actually made me feel more powerful and in control, and I liked that!
"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Apr 20, 2020 01:45AM MinusTwo wrote:

LE massage should be only the very lightest touch with your finger tips. Not much more than a whisper. It shouldn't leave you sore.

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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Apr 20, 2020 10:25AM petite1 wrote:

kimmh012, That sounds do similar to what I am going through. It seemed like it was a little better around the scar, but yesterday it hurt. This morning it seems a little better. I don't have a repeat ultrasound until July and it sounds like the LE therapy won't be until after that. Mostly due to COVID19 backlog. I worry about lifting anything. It is hard to do any kind of chores. I will be glad to get more information about what I can and cannot do.

petite Dx 8/23/2019, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/7 nodes, ER+/PR-, HER2- Radiation Therapy 10/20/2019 Whole-breast: Breast Hormonal Therapy 12/18/2019 Arimidex (anastrozole)
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Apr 20, 2020 10:56AM Kimmh012 wrote:

minustwo, thats what I was thinking, should be no pain. I did soft, petting a baby kitten soft, when I did the MLD. But, my left breast and arm are pretty sore/painful and swollen in in rest. like I have been lifting weights non stop and trying to lift over my head is painful as well.

Petite1, wow, I would not stand for LE PT until July. I always try to be on the offensive side of things, lol, and very proactive advocate with everything with doctors or lawyers, etc etc. Seems they only do what you ask to tell them, can't believe we have to tell Onc to order extra blood tests since they already drawing blood, ugh.

I called and left a message at the LE department I was referred too and asked for a Vitual Visit as I feel I need compression garments and jovipak/chip bags ASAP, that are all covered 100% through my insurance since meeting my deductible.

I have also called Dr. Perry, StopChasingPain.com, who does a Lymphatic Mojo class. I have seen alot of his videos, but nothing specific to breast/chest/truncal MLD and lymphedema, hoping he writes back, fingers crossed.

~ALWAYS AN ADVENTURE~ Dx 3/22/2019, IDC, Left, 2cm, Stage IIA, Grade 3, 1/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 4/3/2019 Lumpectomy: Left; Lymph node removal: Sentinel Dx 5/1/2019, DCIS, Left, 1cm, Stage 0, Grade 3, 1/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 5/1/2019 Lumpectomy: Left Chemotherapy 5/13/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy 6/24/2019 AC Chemotherapy 9/17/2019 Taxotere (docetaxel) Targeted Therapy 9/18/2019 Herceptin (trastuzumab) Surgery 11/6/2019 Lumpectomy Radiation Therapy 1/13/2020 Whole-breast: Breast, Lymph nodes Hormonal Therapy 3/1/2020 Arimidex (anastrozole) Hormonal Therapy 4/28/2020 Aromasin (exemestane)
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Apr 21, 2020 11:35AM petite1 wrote:

MinusTwo, I am probably massaging with too much pressure. My SIL said the same - very light touch.

Kimmh12, Since my PCP has to do the referral, I will go straight to him and should be able to get it a little earlier. In the meantime, I will do some local research to find out where I will need to go. (rural area)

petite Dx 8/23/2019, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/7 nodes, ER+/PR-, HER2- Radiation Therapy 10/20/2019 Whole-breast: Breast Hormonal Therapy 12/18/2019 Arimidex (anastrozole)
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Apr 21, 2020 04:21PM Kimmh012 wrote:

petite1, I am all to familiar with small town, small minds. I drive 3hours round trip for all my treatments ... Jan 7-Feb 7 drove 3 hours every day for radiation. I did find a Breast Massage video and my breast felt better after.. i have my Hereceptin I union next week so I hope to beable to visit LE and get a few assessors, swell spot/chip bag for breast and cleavage and or a script and I will buy my own.

Here is link for breast massage, hope it works.

https://breasthealthproject.com/breast-health-101/...

"Don't worry, Be Happy...Stay Safe"

~ALWAYS AN ADVENTURE~ Dx 3/22/2019, IDC, Left, 2cm, Stage IIA, Grade 3, 1/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 4/3/2019 Lumpectomy: Left; Lymph node removal: Sentinel Dx 5/1/2019, DCIS, Left, 1cm, Stage 0, Grade 3, 1/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 5/1/2019 Lumpectomy: Left Chemotherapy 5/13/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy 6/24/2019 AC Chemotherapy 9/17/2019 Taxotere (docetaxel) Targeted Therapy 9/18/2019 Herceptin (trastuzumab) Surgery 11/6/2019 Lumpectomy Radiation Therapy 1/13/2020 Whole-breast: Breast, Lymph nodes Hormonal Therapy 3/1/2020 Arimidex (anastrozole) Hormonal Therapy 4/28/2020 Aromasin (exemestane)
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Apr 22, 2020 11:33AM Kara70 wrote:

petite1, I'm sorry to hear that you're not getting help soon and you certainly need to know how and what to do. I did not get lymphedema, but I am at risk for it due to a mastectomy and sentinel node removal. However, I always do lymph draining exercises (not MLD, which you should do if you have LE), before I do any other exercises or sometimes even when I'm not, because it feels good. In fact, just doing them every day is good for many people since our lymph is a major player in our immune system. There are videos on YouTube that will show you how to do those and it can help right now, even if you don't exercise until you know what you're allowed to do. As long as you have full mobility in your chest and shoulder area and are recovered from all surgeries, they are safe.

Exercise and a healthy diet are really important in lymphedema prevention and management and you can work on those areas now, with the lymph drainage movements and making sure you have an anti-inflammatory diet and anti-edema (low salt, high potassium) diet.

But get your appointment with a LE therapist as soon as you can, good luck!


D/X 9/2014 Stage II A, 0/1 nodes Right Side Mastectomy, T/C chemotherapy, Reconstruction, Tamoxifen
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Apr 22, 2020 10:41PM TxMom3 wrote:

Hi everyone,

I am just joining this group after having bilateral mastectomy and axillary lymph node dissection on left underarm. After drains were removed I got cording in left arm. What is MLD? and is LE just lymphadema? Can you tell me more about Lebed exercises? Is there only one dvd for it or multiple? If multiple what do you recommend? Or are there free videos on YouTube that are just as helpful?

I did watch one video of someone at Dana-Farber Cancer institute that was somewhat helpful. Interestingly I adapted my post surgery exercises and added aerobic dance steps to music and came up with something similar on my own, but I am getting tired of the same routine and looking for other options.

Thanks, I had never heard of Lebed method until scanning these posts!

Dx 12/17/2019, IDC, Left, 5cm, Stage IIIB, Grade 2, 14/35 nodes, ER+/PR+, HER2- Surgery 1/22/2020 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 2/17/2020 AC + T (Taxol)
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Apr 23, 2020 12:01AM MinusTwo wrote:

TxMom - MLD is manual lymph drainage. You should be measured by a certified, trained LE physical therapist and she or he will teach you how to do MLD. It is great to be looking for videos on your own, but you really do need to start out with a professional who can make individual recommendations since each one of us is different. Take a look at the link below for a basic introduction to LE.

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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Apr 24, 2020 12:24PM petite1 wrote:

TxMom3, I have been doing the Dana-Farber video. I have a little trouble with the Lebed dance, but I can do the other stretches and exercise. I will be glad when all the referrals and authorizations are in and I can see a certified LE therapist.

petite Dx 8/23/2019, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/7 nodes, ER+/PR-, HER2- Radiation Therapy 10/20/2019 Whole-breast: Breast Hormonal Therapy 12/18/2019 Arimidex (anastrozole)
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Apr 25, 2020 12:39PM BlueGirlRedState wrote:

Lymphedema sucks, sorry you are experiencing it. What is available, what is covered by insurance ( if it is covered) really varies. I had nodes removed in Left-Axillla in 2009 and 2016. Lymphedema struck in the R-arm in 2019. Turned out to be a new cancer. I do see a LE therapist who recommended compression sleeve and glove ( referral had to go through oncologist for insurance). Went to speciality store, fit is important, also could be billed to insurance who picked up some of the cost. ALso there are different kinds, and some might be a better option. Recently the therapist suggested a home pump which I have just started using. Very Expensive, insurance picked up much of the cost. I also do self massage 1-2x/day. LE is a lot better than it was last July when I first saw the therapist, but still there, and I have been told, always will be, and I will always have to work on it. I found this video on self-massage by the India Lymphedema Foundation helpful https://www.youtube.com/watch?v=sS_WzAdfcSk&feature=youtu.be

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Apr 26, 2020 08:24AM petite1 wrote:

BlueGirlRedState, Thank you

petite Dx 8/23/2019, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/7 nodes, ER+/PR-, HER2- Radiation Therapy 10/20/2019 Whole-breast: Breast Hormonal Therapy 12/18/2019 Arimidex (anastrozole)
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Apr 26, 2020 01:31PM Darlene63 wrote:

How so I know if I have LE? My right axillary area where they took out the lymph nodes is swollen and I can't tell what is what and no want wants to really help me. I also have a hard cord under the scar where the lymph nodes were removed. I found out that this is a cord and no one will help me with it or give me any instructions. After my surgery I got a seroma and the only reason I knew anything about it was this website. I feel lost and most of my care team, if you want to call it a team are men. There is no way that they can every understnad what it is like to have breast cancer.

Dx 2/21/2020, ILC, Right, 4cm, Grade 2, 0/9 nodes, ER+/PR+, HER2- (IHC) Surgery 2/28/2020 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Hormonal Therapy 4/2/2020 Arimidex (anastrozole) Radiation Therapy 4/24/2020 3DCRT: Breast, Lymph nodes, Chest wall
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Apr 26, 2020 01:44PM MinusTwo wrote:

Darlene - It's been documented that the average doctor gets less than one hour of education on lymphadema in the 6 or 10 years of medical school. It's up to you to push until you get a referral to a trained, certified LE PT. My breast surgeon, my plastic surgeon, my oncologist - all said doesn't happen, very rare. I referred myself to the doc in charge of a wound care & LE department at a major medical center. He got me to the proper therapists for treatment & training.

When I had a cancer recurrence and lymph node dissection - same story. Except this time the radiation oncologist recognized the problem immediately and sent me to a trained therapist. She did initial measurements, trained me in MLD, gave me exercise sheets, ordered sleeves & gloves and continued to see me once a month for a year for additional review, massages, training & support.

You must advocate. Maybe it will be your OB/Gyn who will recognize the need to at least get measured. The squeeky wheel gets the grease. Below is a great link for initial information and how to find trained therapists.

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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Apr 26, 2020 02:43PM TxMom3 wrote:

Darlene - I checked out that stepup-speakout website that MinusTwo recommended and it was great information. Thanks MinusTwo!!!

I also had cording after my surgery and was fortunate to start physical therapy right away. Most of my hour long session was massage, but she didn't really talk to me much about doing massage myself which I am reading more about here. I did have the Tactile Medical Flexitouch pump recommended to me and was able to get it free since my out of pocket costs were met for the year. I highly recommend one of those if you can get it. I am about 3 months out from my surgery and with exercise, massage and pump can now raise my left arm over my head again even though I feel stretching (started out at only about 90 degrees out). According to website that is typical recovery period, so hang in there.

Dx 12/17/2019, IDC, Left, 5cm, Stage IIIB, Grade 2, 14/35 nodes, ER+/PR+, HER2- Surgery 1/22/2020 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 2/17/2020 AC + T (Taxol)
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Jun 16, 2020 11:27PM TxMom3 wrote:

I will be starting radiation soon and some Dr's give tatoos to mark areas for radiation. I already have cording and some LE and thought we were supposed to avoid tatoos. One Dr. said they were small so OK. Any thoughts from your doctors? Should I insist on other type of marking?

Thanks!

Dx 12/17/2019, IDC, Left, 5cm, Stage IIIB, Grade 2, 14/35 nodes, ER+/PR+, HER2- Surgery 1/22/2020 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 2/17/2020 AC + T (Taxol)
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Jun 17, 2020 10:05AM MinusTwo wrote:

My doc gave me the choice for tatoos or not. I went ahead because it made sense to have the best possible positioning each time. They really are no bigger than a small freckle. Interesting that I never considered a possible tie in with LE all this time and I don't recall seeing it mentioned on the boards.

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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Jun 25, 2020 11:29AM MinusTwo wrote:

LE in the summer - Great article from CURE reprinted courtesy of WearEase

https://www.curetoday.com/community/bonnie-annis/2...

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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Jun 25, 2020 01:58PM BlueGirlRedState wrote:

TxMom3 - problems with tatoos were never mentioned, even if they are very tiny. Unless there is a need for them beyond radiation, is sticky dot an option? Something that would take more than soap/water to remove?

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Jun 28, 2020 09:02AM TxMom3 wrote:

Thanks everybody. I found a radiation oncologist close by that only does other types of markings (permanent type pen covered by waterproof tape). The tatoo encouraging dr. was my second opinion but at a very good research type hospital. Also thanks Minus Two for the great resources you share!

Dx 12/17/2019, IDC, Left, 5cm, Stage IIIB, Grade 2, 14/35 nodes, ER+/PR+, HER2- Surgery 1/22/2020 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 2/17/2020 AC + T (Taxol)
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Jun 30, 2020 04:25PM BlueGirlRedState wrote:

Has anyone found a "user friendly" measuring tape to help with self-monitoring? I find perception unreliable. My left hand is just too clumsy to measure the right arm. I see some tapes measures on amazon geared towards body builders that let you snap the end into a lock. They are cheap, but maybe an answer. Probably won't see the therapist as often since she thinks I am am managing it well, even though it goes up and down. Any experience out there with laser therapy or surgical node transfer? Are they just temporary relief? I think there is more than one forum for lymphedema, so might post this on those as well.

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