Kicking LEs butt!! Exercise & Self Care Log
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In March Lymphedivas posted their new compression sleeves for spring. They asked everyone to help name the new designs. There was one sleeve that I really liked so I posted what I would call it..THEY PICKED MY NAME!!! I know it's silly but I'm so excited! Here's the pictures from Instagram. Twa6567 is my user name on Instagram.
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Not silly at all, Vargadoll--exciting! You must be a poet, yes? Hope this honor came with a complimentary set of sleeve and gauntlet in the Summer Nights pattern!
Wear it with pride!
Binney0 -
I love the name. And agree - hopefully you were 'gifted' with sleeves as the winner.
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That's what my DH said! I have no clue if there is a prize but it would be nice! I only discovered that my name had been used because I was on the website to see what discounts were going on and low and behold there was my SUMMER NIGHTS! Lol
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I don’t have it yet. Will it hurt to wear sleeve doing yard work
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I start radiation tomorrow, 28 plus 5 boosts
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Benji - below is a link to a great site about LE. You should be diagnosed & seen by a trained, certified LE tech and work with their recommendations. That said, I don't see any harm in wearing a sleeve to garden. But there's a potential problem wearing a sleeve w/o a gauntlet or glove. It's also important to learn how to move the lymph fluid. My radiologist is the one who diagnosed my LE and sent me to a trained PT. She was much more alert to potential problems than any of my other docs.
https://www.stepup-speakout.org/
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Help!
I have been wondering for quite some time if I am developing lymphedema in the trunkal area. After radiation, I developed a bruised feeling along my ribs by the bra line underneath my arm. The radiation oncologist said it was impossible that the radiation caused the pain. He insisted that I injured myself during the surgery (lumpectomy). I thought that was very odd because I did not have that pain after my surgery. Well, it's been almost two years since my surgery and the pain kind of comes and goes. I also noticed quite a bit of asymmetry in that area. A very pronounced lump with dimpling. I visited my oncologist and she basically said it was just my body shape, indicating that it was caused by being overweight. I had wanted a referral to a L/E therapist but they told me it was not necessary. Well, during the last three months it's has become painful again and I developed a red marking that does not go away. I again went to my my oncologist and they said it was nothing and made me feel ridiculous for bringing it up. They are basically telling me that it's fat. Well now I have developed a red area on my waist line on the same side that does not go away. I then decided to visit my GP thinking maybe it's something totally unrelated to my cancer treatment. She noticed the asymmetrical area and upon a physical exam said that it appears that the area is quite sensitive and the pain appears to be between the rib cage. She ordered X-rays and they came back normal. Thank goodness. She told me to wait and talk to my oncologist which I have an appoint in late June. I am sure that something is not right because of the discoloration at the bra line and at the waist area and the constant pain. My oncologist said the pain was from referred pain from the lumpectomy and the redness is because my skin is thin and showing the blood vessels. Though this discoloration doesn't happen on any other area of my body but the treated side. Please let me know if this sounds like L/E. I know you are suppose to be proactive with L/E so that it doesn't progress. Thanks for any feedback!
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Hello Shocked. Have you gone on the web site Step up speak out? It gives a a lot of comprehensive info about LE. Whatever you are experiencing, I hope you get some one to pay attention and help you with it.
This question is for those who may not have arm LE but wear a sleeve for flying as a precaution. I read that 15-20 compression is ok but the fitter I saw said 20-30 would be fine. Any opinions ? Thanks.
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Good morning ladies. My MIL is a two time bc survivor. She has both LE and brachia plexus damage on her right arm from her treatment many years ago. A couple days after Christmas, she slipped in the shower and broke her right shoulder. It still hasn't healed so she's facing surgery soon. Mil is very frightened of surgery on her damaged arm. She deals with a lot of pain already. Anyone here have non LE surgery on the arm that is impacted? We're talking to a couple good surgeons but also looking for any personal experience so we know what to expect. TIA
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Flynn, it just never seems fair that we BC survivors should have to deal with anything else, y'know? Wee should definiely get a pass on something like this! Unfortunately, that sure isn't the case, and I hope you'll give your MIL our best wishes for a swift and uncomplicated recovery.
This page has some suggestion for surgery on an area with LE--scroll down to the very last section on the page:
http://www.stepup-speakout.org/Emergencies_and_Med...
If your MIL has a good LE therapist, you might request that your surgeon consult with her/him before surgery. The brachial plexopathy does complicate things a bit because it's harder to clear the fluid from a dependent arm, as muscle action is the prime mover of lymph fluid, but it shouldn't interfere with the surgery. If she's interested in more information about breast cancer-related brachial plexus damage there are some tips and information here:
http://www.stepup-speakout.org/Radiation_Induced_B...
There's also a thread here in the LE discussion board about radiation-induced brachial plexopathy if she's interested.
Hugs to you and a really gentle hug to your MIL. Please let us know how she does,
Binney0 -
Thanks so much Binney! MIL counts herself very lucky to be a 20 year survivor but she paid quite a price. When I found out that I had bc, she told me she wished we could change places so she could spare me the whole ordeal. The links that you included look very helpful, i'll pass them along. She is going into her LE clinic this week to see what they have to say, though it doesn't seem like she has a lot of non surgical options.
Have a wonderful day!
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Hi all. I miss this thread so much but can't do computer reading texting much with these blasted dry eyes. But of course I'll check in
Whose up for exercise?I have been consistent but only two three times a week for walking and weights. I'm planning on upping my walking as I'm getting chunky round the middle. Can't let that happen.
Come on all. Get your game on and move a bit. Report in. We are no competition here. Go at your own pace.
Starting my own challenge Monday for remainder of June. Walking four times a week and weights three! Make your own challenge. Anything just move!!!! Report in when you want!! Go go go!!
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Hugz- I have missed you all! I have my fingers crossed that the rest of the summer will slow down for me. So much has happened in such a short time. Last day of April (my DD birthday) I got so sick! Either food poisoning or a food allergy. I lost 7 pounds (yay but not the way I wanted!) My father in law fell went into Hospice care and passed away, both my 2 little grandchildren had dental surgery, my DD had surgery and my smaller furr ball cat got sick. That the first part of May. Last of my my small cat passed away very unexpected. He was getting better. Then our big cat became sick last Wednesday and he passed this Wednesday! My girl turned 30 last weekend we had a big party and this weekend I have a wedding out of state that I need to attend. (Not far just a hour and half drive) my birthday is also the same day as the wedding. So I am ready to exercise with you ladies again!!! I need to focus on me for a little bit. The LE has been "ok" but my scar from surgery such does cause an issue! Anyone else have this problem? I'm starting to feel like I didn't have the best surgeon. Yes he got me clean margins but left with me a bunched up scar and I still that's where my LE came from.
Let's do this LE ladies!
Teresa
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I was just thinking about this thread earlier this week. Hooray Hugz for jogging our memories.
Like Varga, I got waylaid. Contracted a virus & it took virtually a month to get rid of the cough. I'm doing better at making Silver Sneakers twice a week (weight bearing, stretching, balance, mild aerobics). I usually make my chair yoga class on Monday afternoons. Learning how to breath & do some self-acupressure has been extremely useful. Now that it's summer our neighborhood has water aerobics two evenings a week. It has always included a Saturday morning, but we lost our Saturday teacher and have not been able to find a replacement.
Had my yearly check up with the heart doc today. Looks like all minor damage from Adriamycin & Herceptin has healed. NO permanent heart damage. Woo Hoo. His main recommendation - keep moving.
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Doing Aqua exercise classes at the gym!!
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Minus- that's excellent news!!!
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I haven't been active on this thread lately, but I wanted to let you guys know about truncal lymphedema. I started experiencing pain on my rib cage right after I started radiation and questioned my radiation oncologist, but he said it was nothing. The pain seemed to come and go and after a year from my treatment I noticed a definite bulge on the treated side below my bra line on my side. The pain still came and went. It felt like a large bruise, very tender to pressure but nothing agonizing. I went to my oncology check up and asked if this could be lymphedema and she said no, it was just fat. I felt embarrassed and dismissed it but still felt like something was wrong. The area in question seemed to grow in size and the skin was discolored with redness. I went to the nurse practitioner oncologist and showed her and told her I thought it was lymphedema, but she said it was not. Just my body being asymmetrical. I asked if I could have a consultation with a LE therapist and she said no. I then went to my primary care physician and she said there was a tenderness between the lining of my ribs and took X-rays. Luckily nothing showed up on the X-rays. I then had another appoint for my regular checkup with my oncologist and again showed her. She said it was nothing. Perhaps the redness was from an allergic reaction. I said no to her recommendation of Benadryl and other medicines. She looked again and said, "Yeah. I guess I can see what you are talking about. I'll give you a referral to the LE therapist." At last! Well I just had my appointment and the LE therapist said that I most likely have Stage 2 lymphedema! It could possibly be stage 1 but she will have to see how I respond to therapy. Stage 2 does not reduce in size but Stage 1 can possibly. There are 4 stages (0, 1, 2, 3). I am so angry that my doctors did not listen to me for an entire year. I knew there was something wrong but because I am overweight, they did not listen to me and insisted that it was fat. Each time I talked about it I was so embarrassed because they disregarded my concerns and basically told me that I was lopsidedly fat. Time is of the essence to treat lymphedema before it progresses. I could have potentially not been as advanced in my stage of lymphedema if they had listened to me. I just want other women out there to push for their referral if they have similar symptoms. I will be talking to them at my next appointment about the difficulty in diagnosing truncal lymphedema and that they need to listen to their patients. I believe that they are at fault for my advanced stage of lymphedema. It is completely unacceptable to be dismissed. I have my compression garments on order and hopefully things will go down.
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Shocked- our stories are similar! I'm stage 2 as well...truncal LE also...
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Shocked - it is such a shame that docs aren't educated about LE. We shouldn't have to, but glad you kept pushing. This link below has several things you can print and take to your docs to help them learn.
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hi all, didn’t meet June challenge but almost. Walked more irregardless. certainly am pumped up for July.
13 hours in Garden yesterday. Had sunshirt on 90 percent of the time but a weird little rash on my le arm developed. Will show mld girl today. Maybe dirt got thru my sleeve and rashed it out. Taking good care of it. Also bashed my finger between concrete landscaping blocks a week ago. It’s coming along fine so far. I’m accident prone for sure
Looks like we have all had stumbling blocks out in front of us. Varga and minus you’ve had tough times. Varga,We had to put down our dog couple weeks ago so I know what your going thru. It’s a heartbreaker. Not sure if I can get a dog again, certainly not ready emotionally. Let’s not let life get in the way of exercise. I know that’s hard to do but it’s so important.
Minus congrats on heart checkup. Way to go!
Varga I have to stretch my rad and surgery scar area every day or I get Charlie horses. I feel my scar does contribute to breast le. Ugh le stinks!
Good job glennie! Your encouragement is helping me! Weights and walk tomorrow as today stiff and sore and exhausted from gardening.
Just going to lay flat out on that mld bed and soak up the mld today. Self care today and Rhuematology results today. Yup osteo arthritis with bone spurs here we come. Have great day. I’ll pop in to see how all are exercising.
Big win for me. Increased my weights for triceps to 8.1/2 pounds last week!!Took me a year to get in that extra pound. Slow and steady wins the race.
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Hugz- sorry to hear about your dog. We aren't ready for another pet just yet either. I still tear up thinking about our boys..I went to my MLD girl today to! We have so much in common it's like we are soul sisters and BC brought us together. That's awesome on the weight increase...I'm still struggling! I can do 10 pounds easy but I can't! I her cording if I even try to do 5. Maybe I'm moving up to fast or doing to many reps...I have been trying to find a personal trainer that knows about LE.
I have been doing pretty good with my exercise. In the pool almost everyday doing laps. Plus going to the gym at my church and exercising there. It's set up like a curves and has treadmills, a bike and 2 Elliptical.
Have a great day ladies!
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Hugz - so glad to hear from you. WOW - 13 hours in the garden? We've been at 100 degrees for days so I'm trying NOT to go in the garden. I have no problems with my mastectomy scars, but the scars from the later ALND and rads are just like yours. Have to stretch every day.
Varga - you're way ahead of me. Can I whine that I'm older??? Will that excuse me? Hmmm, not so much.
I go to Chair Yoga on Monday afternoons. Silver Sneakers on Tuesday & Wednesday mornings. And water aerobics on Monday & Wednesday nights. Yes, I know I should be walking on the tread mill in addition, but just can't seem to make it happen. Even with all this activity, only one meal a day and rarely any bread or pasta or potatoes - I can't seem to lose weight this summer. I did lose every past year on this same regime, but.... Sigh.
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I finally received my compression camisole for trunkal LE and it fits slightly snug. This is after the fitter went down a size because the first one was completely loose. How tight should it be? I assumed that it would be very snug like Spanx. Also, my arm sleeve was so stiff and tight and creased at my elbow that they are going to redo it. My arm felt like it was in a cast and had to be bent to be comfortable. If it's sized properly, will it be comfortable?
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Shocked - my Belisse Compression Camisole is like you described - slightly snug. it is not like Spanx.
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My Belisse Compression Bra (not camisole) was sized at 32 even though my regular bra size is 34 or 36 depending on the brand. It is VERY snug. And I wear a "swell spot" too which makes it even more snug. I would not say that it is comfortable while sleeping, but it seems to be working. The swelling on the right side has been reduced. And I actually like the sleeping sleeve. If I was to wear the compression bra during the day, I'd probably ask for one the next size up for comfort.
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Piper,
The web site lymphedema products.com sells a hook and eye extension piece which i bought as when I was wearing the full breast chip pad, the bra was way too tight. The extension allowed me to increase or decrease the size depending on if I used the swell spot or not. It does have one extra hook and eye which is no big deal for me and was a lot cheaper that buying another belisse.
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Thanks, flowergal. I'll look into that. I may also check back with the LE clinic about ordering a different size since apparently my insurance will pay for it...
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Good Luck .I found the belisse really did work very well to reduce swelling along with the swell spot. The only thing I didn't like was wearing it in the hot summer but now I don't really need it except for flare ups or flying.
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