GRRRRRRRRR I HATE LE..........

Anonymous

Yeah, no bra after recon sucks. Five months after my exchange surgery, I was stuck wearing a compression tank ---- sooooo sexy being smooshed flat and uniboobed. Even the stupid fitting lady said I looked bad in my tank. I wanted to smack her!!!! 

Laura, I looked into replacing my implants - which was against the advice of my LE physiatrist, myofascial therapist, and PT - and PM'd Deborah at one point to talk about choices. I then did some serious research and came to the conclusion that if I replaced the implants the chances were very high that I'd develop CC again. After being in pain for so long, I'm just not willing to take that risk. I want what's best for my health, to be pain free and able to move on, so I am just removing my implants without replacing. I'm not even considering advanced forms of recon, because I don't want to involve any other parts of my body - my other nodes are working fine! I'm also happy with the rest of my body and don't want any more scars. My therapist told me yesterday he doesn't think I have an unusual amount of scarring in my chest, that it's mainly the capsule and I'll probably experience almost immediate relief once the implants are removed (after recovery from the surgery, of course). While there may be an adhesion to a muscle or chest wall, it's mainly the weight of the implants that have my pecs, neck, shoulders and back all out of whack. From what I've heard from a couple women, removing my implants might slightly improve my LE. That would make me so happy!!

I'm in the process of interviewing new PS's, just waiting for my appts., but that's another story. I'll fill you gals in on that when I know more. 

Marple

Happy Christmas to all my 'swell sistahs'. 

paradiseflower

Dear Ladies.

Just happened to read this topic.

Try juicing celery, cucumber, carrot, and spinach or other greens.

Add a snippet of lime and garlic.

This will alkalinize the body.

Keep drinking it. Keep it in your system.

I have not been diagnosed with anything, and I beg your pardon if I am snooping in.

Just something I thought would help.

I am having severe breast and bone pains. This helps my pains somewhat,

until I find out what is wrong with me.

I am not sure, but something tells me this could give you some relief.

When life hands you lemons.....get out the juicer!

Much love and prayers to you.

Paradiseflower

Estepp

Tina... GOOD FOR YOU ! You have made your choice. THAT in itself is fantastic. Boy, just getting to that is a big deal. It was for me... once I made a final choice.. I felt SO SO much better. I actually... think I might do the same as you. Either way.. I am glad you are standing up to the pain of CC and dumping the implants. You are in my thoughts now! XXXOOO

Paradise..... thanks for giving another side.... I like it!

Marple

I hate LE but I sure do love my DH who gave me an Australian Outback brand of shirt this morning (I love them).  Man's size M which I can wear when my arm is wrapped.  It was so thoughtful, made me cry.  LMBO, and fortunately he too fits a med.    I got him one (different colour) thinking at the time, "I can wear it too".

Anonymous

I need help!  I have read and read about LE but have not found anything about the opposite side...  I had BC on my right side but currently my left side is swollen.  My left hand is twice the size of my right.  My arm pit hurts so much, is so swollen, it feels like the blood flow to the arm could be cut off, even my toes are swollen.  Tylenol helps a small amount but I'm not sure what to do... on Christmas.

kira66715

Pasofino--even if it's Christmas--your oncologist has someone on-call,and a new swelling deserves at the least a call, and I know you'll hate this--maybe an evaluation to rule out a blood clot (they almost never rule in, but can be very serious. Someone on this board had one.)

Now, Jane aka OnebadBoob, she developed LE on her "good" side, but it wasn't treated until she got the full evaluation--an MRI, a doctor visit, the ultrasound to rule out clot. They don't know why it happened--maybe bug bites and a tough blood draw. It has responded beautifully.

The fact that you're swollen in your toes, arm and in pain--please call the doctor! Please!--someone needs to see you. 

Please let us know how you are doing.

I was on call for years on Christmas--as I'm Jewish--it comes with the territory of working in medicine, and people don't get sick 9-5. Do NOT feel guilty--CALL!

Kira

Suzybelle

lmc, aweome news about the hemangioma!!!!!  That is a big word...can you lift heavy items now b/c you have  'he-man'-gioma/???  Get it????  Hardy har har - I crack myself up.

Pasofino, that is scary - please let us know how you're doing.

Merry Christmas, Ladies of LE!!!!!!!!!!!!!!

Anonymous

Merry Christmas, all my wonderful swell friends!!

Suzy, I think you need to do a LE stand-up bit! Love your ability to find the funny in this experience.  

Suzybelle

Thanks, Tina, but I think I'd better keep my day job. 

Well, I'm off to a holiday dinner where I'm betting no less than 3 relatives will ask, "How much longer do you have to wear that?" or my personal fave, "What's wrong with your arm?"

I'm seriously considering telling them it's a side effect from an STD. (why do we have an angel smiley but no devil smiley????  I need that a lot more.)

kira66715

Suzy, the only problem with the STD answer is your poor DH has to sit there, somehow complicit.

There has to be an amazing comeback to the "how long" question--and you're the woman to come up with it.

Your huge fan

Kira

Marple

LOL, well, Suzy could say she didn't get it from him.

Anonymous

Personally, I like, "Until Hell freezes over". 

But, how about, "Until they find a cure, which is hopefully in my lifetime".

Binney4

Pasofino, I agree with the others -- get help today, holiday or no.

But I'm wondering if you still have your port in, and if it's on your left side? Rarely, port placement can put pressure on the thoracic duct, slowing lymph flow in the left arm and both legs (the right arm is not affected, because it empties into a different duct). If other possiblilities are ruled out you might want to bring this up, as it's rare enough that few doctors are aware of it. Once the port is adjusted or removed the swelling goes down, by the way, so it's not a permanent condition. (Send me a PM if you want more information, or if your doctors would like to consult with a doctor who's researching this, and I'll put you in touch with him.)

Please do let us know how you're doing!

Be well,
Binney

Anonymous

Thanks!  I called the onc and they suggested I'd take 2 relafen and see if it helps the swelling.  I'll go in Monday to get checked out.  I do have a port on the left side and always thought it pushed too much on my collar bone.  I took the meds at noon and still feel a whole lot better.  The swelling is down, not totally gone, but its at least tolerable. Thanks for your help!

mrsnjband

Hi LE Friends,

My cellulitus is almost cleared up.  I have 2 small areas that aren't going away. So I'm still on oral antibiotics, topical antibiotics & the special acid water from someone in my church.  Other than these two areas, it is doing much better. I'm so tired of it, I want it to go away.

Talked to my GP and thinks I might need a scar revision since I have a small area that just won't heal.  I want this to be done as well because it might be the source of the bacteria getting.

Grrrrrrrrrrrrrrrrrrrrr.... NJ

Binney4

Aw, NJ, I'm so sorry! How frustrating! How's your poor tummy holding up to the antibiotics? Forget taking down the decorations and just get plenty of rest and relaxation. Do keep us posted. Hugs and prayers for smooth sailing through the last bit of cellulitis, and quick, uneventful scar healing. <Sigh!> It'll end, NJ, even if it doesn't seem like it at the moment!
Binney

kira66715

Norma Jean,

  Just want to second Binney--you handle this with such grace--be kind to yourself and know that it will pass--and the sooner it's in your rear view mirror, the better.

Kira--sending healing thoughts

lmc1970

You're funny Suzybelle!!

I spent half of Christmas day in the hospital so they could give me antibiotics for my cellulitis only to find out they don't think I have it. Apparently the MRI showed some masses in the armpit that might be hitting on the nerves causing the red marks on my arm. I guess the swelling is from the LE I don't have?

I've decided not to have any more chemo until they test what is going on inside my axilla. They also say there is a 5cm tumor there but it hasn't responded to chemo....uh maybe it's not cancer??? The one node that was tested has shrunk heaps so I don't know why one would and one wouldn't but I suppose stranger things have happened in the world of cancer.

Anyway, I am very happy to get a break from chemo. I was doing very well but after 6 of them I can't shake this horrible nausea. I thought it was the antibiotics but I stopped them two days ago. I long to feel normal again. I long for the day I don't have to GRRRRRRRRRRRR! 

3jaysmom

got a question for all you "swell" ladies.. i'm having a REAL problem with "pitting " edema, right now. we're cking out the cause starting next week. they want me on diuretics, and not drinkso much.. the drinking part, oh, well, my diabetes is "up" so, im drinking, and peeing, etc. etc, all day (and night ) long.. the question is: i've heard fro LE therapist NOT to take diuretics, as the protein is left in the lymph system when h2o is flushed, and makes the ymph system even worse.. what's your take on this? i don't take rx diuretics, gives my MS spasms a fit.. so, i take an herbal equivilent..marshmallow root; it seems to work just fine. but, do i take it? haven't yet, against med advise.. but they're in denial of LE so what DO I DO?? p.s. wearing the whole gear now.. the crossover arms from Gottfreid, and the Gott. gloves, as well.doing MLD on arm, and hands, with truncal MLD periodically, and wrapping hands at night .. PHEW!! we have a cold front in, and i cleaned my rugs after Christmas.. so, all is neccesary to control it. its working, and im equipped for almost everything!! also wearing a light compression vest w/wout "foobs" as needed.. think i got it all covered. next wk gonna get appt. to learn truncal MLD its been coming up since "dog ear" surgery.. right in those spots.. please let me know what to do with the diuretic problem.. thanks.. Happy Holidays.. We Will Survive!!!         3jays

Marple

My understanding about diuretics is the same as yours 3jays.  Having said that I'm on them for blood pressure issues but I try to drink a lot of water to help compensate.  Taking diuretics and not drinking I would think would be detrimental for LE from what I've read.

Those more in the know will hopefully post soon.  Good luck.

Gentle hugs.

kira66715

3jays mom--

For LE, you want to avoid diuretics, and if your sugar is up--your body craves water to keep it down--the "renal threshold" for sugar is around 300 or so--you can drink and pee it off.

 So few doctors "get" LE--I take my med students to an assisted living to interview patients, and they all have swollen legs--usually due to venous insufficiency--and compression stockings would be a good idea, yet they all get diuretics...Arghh.

Where is your pitting edema--and in LE, pitting is a sign of reversible edema.

Kira

Leslie1962

I must be out of the loop here...what is a LE pump?

kira66715

Leslie,

There are pumps that simulate MLD--the older pumps caused all sorts of problems, and the newer ones are better--like flexitouch--they're expensive, and some women on this board are fighting to get them covered.

You still have to prepare--clear the nodes/trunk--and then wear the pump for about an hour. 

Here's a lymphnotes article on them:

http://www.lymphnotes.com/article.php/id/406/

I've never used one, and at the NLN conference, the flexitouch people had this table where they wanted you to lay down, and they'd put the leg piece on you, and it was just too public for me. I do know several women on this board have gotten great results from them. 

The old ones pushed fluid into places where it didn't belong and caused fibrosis. The new ones are supposedly better, but not perfect, and some of the women who use them need to have the representative come and help them work out the kinks, so it doesn't become an expensive gadget in the closet.

Kira

Suzybelle

NJ and lmc and pasofino, I hope you guys are on the mend and feeling better.

I have been on holiday not just from work, but also from LE.  Have not used my pump in 4 days, have been eating Christmas goodies non-stop, not drinking enough water, or doing MLD.  My arm is not happy, so I'm off holiday now and back to doing my daily stuff.

 But it was really nice to have a break from it, you know???

btw - I have the flexitouch and I love it.  I don't think I'd want to use any of the others, though.

NeedAdvice

Have you seen that MD Anderson is doing surgery to treat lymphedema? Go to their site and look. I'm excited, skeptical but excited just the same.  I hate being reminded every minute that I've had cancer!

Binney4

3Jays, do keep us posted and let us know what you decide and how it works. You've got the right idea about the diuretics for LE, and all I can add is that when I do in-service talks about LE for hospital onc units it's a surprise to the staff that diuretics are not good to use for LE -- but once I say "big protein molecules" the light-bulbs go on. The diabetes control is a bear, especially this time of year, yes? Hoping it gets lots easier!

NeedAdvice, I see from your other posts that you're looking for ways to control the stupid lymphedema. Good for you! Sure is a frustrating and emotional diagnosis, and I'm really sorry you've had to join our Sisterhood of Swell (but glad you found us!)

The anastamosis surgery at MD Anderson is not a fix, just a help in some cases -- patients continue to need to treat the lymphedema on a daily basis. Your best bet, if you haven't already done so, is to connect with a really good lymphedema therapist. You need a referral from any member of your healthcare team. Here's a page about how to find one near you:

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

The treatment is a very gentle directional massage technique (called Manual Lymph Drainage, or MLD), simple exercises, careful skin care to avoid infections, and use of compression as necessary. A therapist will teach you all of this as part of the therapy. None of it is invasive or painful, and there are no drugs to worry about either, but it's a steep learning curve.

Unfortunately, there are no herbal supplements that have curative powers for this condition, though some women find the bromeline in fresh pineapple or the selenium in Brazil nuts helpful in conjunction with complete lymphedema therapy.

We all sure are here for you as you plunge into this "swell" new world. Please tell us how we can help!

Be well,
Binney

kira66715

NeedAdvice,

  I saw your post on the hormonal thread--and I agree--lymphedema is disgusting.

  Various supplements have been tried, but none have proven themselves--that said, I take bioflavanoids, vitamin D (I have been deficient), ginger (anti-inflammatory) and per my endocrinologist--we both think the lab messed up the test, said I had none--vitamin C, along with a multivitamin.

  And, because I have a migraine history--and these have been proven to prevent migraines--I take a fish oil, magnesium, riboflavin and coQ10--quite a lot of supplements.

  Pat O'Connor listed some supplements in his lymphadema people site

http://www.lymphedemapeople.com/thesite/lymphedema_herbal_supplements.htm

Also, there was a page on Livestrong about diet for lymphedema

http://www.livestrong.com/article/339104-food-to-help-lymphedema/

On this link, they talk about vitamins A, C and E--just know that vitamin A is a problematic vitamin and there is a lot of push to take it out of supplements, and over 400IU of E a day is considered an issue--so be careful.

http://www.livestrong.com/article/193714-diet-for-lymphedema/

From the second link:

Alternative Medicine

According to Breastcancer.org (The site or this forum?), some patients with lymphedema have tried alternative medicines like bioflavonoids, rutin and benzopyrones. Alternative medicines may benefit lymphedema but many lack scientific research regarding their safety or effectiveness. Individuals should not take dietary or herbal supplements without consulting a physician. Supplements are not regulated by the U.S. Food and Drug Administration and may have unknown side effects and interact with prescription medications.

My LE therapist is into alternative medicine, and when I broke my hand, she came over with a homeopathic gel and pills and we always talk supplements--she doesn't have a single supplement to recommend, but I'd consider those that decrease inflammation. Never tried cumcerin/tumeric, but I love Indian food.

Hey, when my dear departed horse developed Cushing's disease, he was placed on cinnamon to control his blood sugar--he smelled wonderful!

Please let us know how we can help--lymphedema is so hard to have, and we need all the support and advice we can get.

Kira

TerriD

Imc, I am wondering WHAT your specific symptoms are?  Cellulitis is not always cut and dry dx. I was misdx'ed for 18 months! and even by an Infectious disease dr. Do you have a fever?  Where is teh "rash" and is it hot to touch??? Praying for you!  hugs terri in MIchigan 

This article says that an exception to the no duirectic rule is when the lymphedema is in the legs or due to congestive heart failure.

http://www.lymphedemapeople.com/thesite/lymphedema_diuretics_treatment.htm

This article says duirectics often make lymphedema worse

http://www.lymphedemapeople.com/wiki/doku.php?id=diuretics_are_not_for_lymphedema

lmc1970

Hi Terri-my symptoms are pain, swelling, and some patches of redness and it is also hot to touch. This is on the underside of my upper arm. I have no fever and my blood tests keep coming back normal. Misdiagnosed for 18 months??? Did the infection get worse? And how did they do to get rid of it? Hope all is ok now xoxo