sigh (and CRAP!!) lymphedema...

Christine2000

Well-- I have been so worried about getting lymphedema and my PT really assured me that I was "fine" and doing everything right and had nothing to worry about-- but on vacation in the tropics over Xmas I developed swelling (about 2cm) and PANICKED about the airplane ride home-- I thought I'd arrive with an elephant arm. Now I realize how little I knew/know and am working double time to educate myself. I see a lymphedema specialist on Friday.

everyminute

I have mild lymphedema and had a flare up (with cellulitis) on new years eve. 

Check out the lymphedema board - kira and binney are great!

lexislove

I have mild lymphadema too. I havent done really anything about it yet....Im going to ask my onc for a referall for some massage next week.

I guess having lymphadema is the 2nd club that none of us want to join..............

Bugs

I won't claim lymphadema yet...but I will make sure to get a sleeve before I fly again.  When I flew in Nov (round trip, same day) my arm got "achy" didn't notice swelling..but didn't like the feeling at all!

gogo_xago

hi all, my mom is doing rads. She already had done 8 from 30. She hasn't any problem yet, but I'm afraid of lympedema after the end of radiation. Is something that can do to avoid or to minimize the risk of lympedema? We are going to make a travel by airplane. Is it necessary to get a sleeve? Which doctor is suitable to ask about the sleeve? the surgeon or the radiologist?

everyminute

ask doc for referral to lymphedema therapist for sleeve.  I always fly with one on - even with no symptoms but I have issues from long car rides (over 7 hours) too.

no blood pressure or ivs or blood draws in affected arm.

Careful with repetitive motion (raking, shoveling) and exposure to extreme heat (hot tubs, etc) 

 Check out lymphedema board - kira and binney are on top of things!

gogo_xago

everyminute,

thanks a lot... for info.

Celtic_Spirit

I have slight lymphedema in my right arm, which is my dominant arm. The "idea" of lymphedema scared me far more than the reality. Maybe I had read too many worst-case stories. Anyway, I wear a sleeve when flying and lifting heavy objects and sometimes during exercise. I do MLD 4-5 times per week. That's about it. It really hasn't impacted my life as adversely as I feared it would.

AzKim

I've got it in my left arm,..some days my hand will swell also. I tried the therapist and the MLD to no avail,.so,.I do nothing about it except being careful not to scratch or cut it. I have a sleeve,.but,.all that does is make it swell more just above my elbow. It's crap,.yes,.but,.nothing I can't deal with. So one arm is bigger than the other,.*shrugs*,.Hell Boy doesn't seem to mind,.lol. ' )

((Hugs))

Celtic_Spirit

LOL, AzKim!

Yeah, I had imagined lymphedema would give me arms like Popeye, but so far (almost for a year), the swelling has been very slight. That arm was already larger from years of playing tennis and racquetball, so even the LE therapist couldn't determine how much was swelling and how much was normal. I was so afraid I'd have to become a bubble girl and give up all the activities I love, but that hasn't been the case. I've carried on pretty normally - several cross-country flights, high altitude hiking, messing with the cats, lugging my bike around, working with stained glass, etc.

AzKim

Lol, Celtic,

I haven't changed much of my activities either,..I LOVE hiking and well,.since I live in southern Az,.there are cacti up the a*s! Just gotta be careful not to get stuck. I've got cats too. I also love to garden,. I wore gardening gloves at FIRST,.but,.pfffft,.can't be bothered now. I'm determined to enjoy life as much as I can. If my arm swells up to the size of my thigh,..then,.I'll worry about it. ' )

kimf

I developed lymphedema about 18 mos after mastectomy.I immediately went to a therapist who specialized in manual lymph drainage and she helped me learn how to treat the swelling. I wrapped my arm and hand for 3 months, then switched to a sleeve and glove for 3 months. All the swelling was gone within 6 weeks, but she told me to keep it up until I trained the arm not to swell again. That was in 2006 and I haven't had swelling since! No bandaging, no sleeve, not even during flying. My original swelling came from being nicked by a staple in a new pair of jeans I bought...go figure!

Mom3

I'm so sorry to hear that. Tell me, why do you say that you realized how little you knew. Pls. share b/c to be honest with you I don't know much about lymphedema either.

Binney4

Just want to pop in with a couple of web sites with information about lymphedema. It's not a subject our doctors necessarily know much about, so educating ourselves is really important.

http://www.stepup-speakout.org  (see the pages on risk reduction, exercise, how to find a qualified therapist)

http://www.lymphnet.org  (see their Position Papers for patient information)

We all make our own compromises with both the risk of lymphedema and (for those of us who have swelling) the treatment and self-care we're willing to do -- and that's definitely as it should be. But it's all too likely no one on our medical team will give us straight information about it. So I just wanted to add a couple of pieces of information to help you in deciding how to handle it.

Like breast cancer, lymphedema is staged. Left untreated your lymphedema will slowly progress through the stages. Even if your arm never grows much bigger (which it often doesn't in post-breast cancer lymphedema), the underlying tissues are changed in untreated lymphedema, creating fibrosis, permanent fat deposition, inflammation, and further damage and blockage to the lymph/immune system. Eventually, this can mean increased infection risk, skin changes and loss of both strength and mobility.

The excess fluid in tissues with lymphedema is protein rich and warm, making it the perfect breeding ground for bacteria, so the infection risk is very much higher than normal, even in "mild" lymphdema. Any skin break, even micro-cracks from dry winter skin, can permit bacteria to enter and flourish. Once infection begins it can spread rapidly through the body and become systemic, frequently requiring hospitalization for IV antibiotics. Because the lymph system is part of our immune system, when it's not functioning properly infections don't heal well.

Adequate lymphedema treatment and careful on-going self-care reduces the infection risk and slows or even stops progression of the disease through the stages. But hooking up with a lymphedema therapist who's well-qualified and consciencious can be a challenge. Here's a page about finding one near you:

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Well-treated lymphedema does not automatically call for limitations on the activities you love. In fact, careful lymphedema control is your best guarantee of being able to enjoy those activities way on into the future. 

Knowledge is power!

Hugs all around!
Binney

Bugs

Binney you are a wealth of knowledge on these boards.  Thank you!!