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Does it ever go away?

Dreamy
  • By Dreamy
  • Posted December 2, 2008 at 12:45 pm · 23 replies
  • Shared with the public
0 Recommendations

After my mastectomy my right arm swelled up. At those times, I drank as much water as I could. During hot flashes the lymphedema arm would sweat and the other one didnt. I tried wrapping, lymphatic massage, I even bought the $5,000. Mini pump, and nothing worked. I felt like a failure to them. The nurses in charge of the lymphedema clinic have given up on me. Eventually I will be hospitalized for end of life care. Will the arm go down then? Or will I die with 2 different arms?

Explore topics in this journal entry and replies:

Exercise Cancer Surgery Lymphedema Breast cancer Cellulitis

23 replies

mom2acat

First of all, it's not your fault! You didn't do anything wrong, lymphedema can be triggered by any number of things.

Those nurses should not be giving up on you; I would ask your oncologist for a recommendation to see someone else for the lymhedema, there might be something new that no one has tried yet.

I have been very fortunate that my lymphedema has been very mild for the most part. I only had to go for therapy a short time a few years ago. I developed a cellutis infection in that arm after getting a scratches from a kitten that didn't even draw blood.

LindaLD

Hi, Dreamy-
I had some cording issues during radiation and am now experiencing tightening in my shoulder, but so far just a bit of swelling when I overexert my arm. I am very fearful of lymphadema--I had 23 lymph nodes taken and a ton of radiation. Very high risk.

You sound so weary. I wish I could say something to take your burden away. You are in my thoughts and I wish you relief.

Linda

Dreamy

Thank you for your replies. I have given up on the arm and so has the nurses. I have to buy blouses that are sized for the big arm and of course that just makes the other look smaller, flopping in a too big cuff. We have tried everything. They had some new material that would channel the fluids but that did not work. It just seems to have swelled to this size and stayed there. And then there is the loss of dexterity in the hand. Its like Shrek sewing in my quilting class. I worry about getting poked by a needle. So far the class has accommodated all of my needs. I love quilting. I just hope that the hand doesnt do another swell or the stitches are going to be huge!

As for sounding weary. No I am not. Really. I have pep pills for that. So I can stay awake for a movie, have a long lunch with relatives and work on my quilts.

ihopeyousing

I had a time with lymphodema as well. I saw a wonderful physical therapist who gave me exercises and minimal equipment to take home ( a glove you can get at any dept store - I wore this at night) and work out on my own, after 4 sessions. Did you see a PT who specialize in lymphodema? It was covered.
I hope you find some relief. It sounds like you are coping well with the quilters. You are in my thoughts.

KateG

Hi. I don't have any knowledge of the physical stuff you're going through. but to read you talk about end of life care makes me sad. this should not be happening to you. do you live near a major hospital? you will be okay.

palmtree620

Dear Dreamy: Did they teach you self massage and have they fitted you for a compression garment? They should be able to teach you how to wrap your arm with bandages and also teach you exercises for your arm. Also try keeping the arm elevated as much as possible. Some therapists do not like to use the pump because they claim it could make the arm worse but it is up to therapist. I have had lymphedema several times. It comes and goes but I have had the therapist teach me how to wrap my arm and can do exercises at home. I have a sleeve for days and wrap my arm at night when I need to.
Regards,
Donna

deebelle

Not going thru any of that so I just want to say that I am thinking of you and I care!

hugs;
Dee

ckgoduto

I have lymphedema in my rt . arm mostly the hand. I have to be careful about wearing rings. My lymphedema started in the spring of 1991 (it was my 1 yr. breast cancer anniversary) when I was walking through a parking lot and hit my hand hard on a parked car. No broken skin just a big oouch. I was in the hospital within 24 hours later with a cellulitis infection. It turned to a staph infection.

Five years after that I got a sliver and back I was in the hospital with cellulitis again. The third and last time we caught it in time by going to the ER before I needed hospitalization I was fitted with an arm sleeve and I also purchased one of those pumps. Thank God my arm has settled down and I do not use either thing now. It still is bigger than my left arm and always will be.

A very good friend of mine had lymphedema from radical breast cancer back in the late seventies and her arm was the most severe anyone has ever seen. She had to replace her arm sleeves every 6 mos. and she continually used the pump. She would have to use her good arm to pick up her bad arm and place it on a table. Everyone did stare at her because her arm was the size of an elephant trunk. She did not let it bother her, she went about her life as usual and I'm sorry to say went to her death with the lymphedema arm.

shirl5alive

Hi, I have lymphodema too. It started when I found out my breast cancer had returned after 15 years. It is now in my spine. It seems like the cancer in my spine and the lymphodema is connected, but I don't know. I was fitted with a compression garment and I do the massage they taught me. It seems to be under control, but I'm not sure if the size of my arm will ever return to normal. I just don't know, but I keep doing what they tell me to do. You should be very very careful with that arm. Don't let them take blood from it or even take your blood pressure on that arm. Take care of our arm. It's important!

TwoGee

To all with lymphodema, please be careful with manicures, my friend found out this what was causing her recent attacks of cellulitis.
And always wear your compression sleeve on an airplane.

Best wishes to all.
Gail

kleighk

Have you tried going to a massage therapist who knows how to do lymphnode drainage? I have been lucky enough so far to only deal with it once in the beginning and it was resolved with abx. I have heard from other bc women that the massage works very well. It is covered by medicare and most other insurances because it is a medical tx. Good luck, and my prayers are with you.

LaGata

The message on my Medic Alert bracelet says, "Don't use THIS arm for IV, IM, BP, or Finger Sticks. Left Mastectomy". I didn't have room for "18 nodes removed."

Two ladies I met while taking the ACS class to help other BC survivors after surgery, said they both contracted lymphadema at 8 years post surgery after being bitten by mosquitoes.

Are you stage four? I just reached that level with metastasis to my spine, and it "ain't" a good place to be. My best to you.

LaGata aka Laura

Dreamy

Yes I have tried lymphatic drainage.... to no avail. I have just got used to sizing my tops for the big arm. As for the other arm, it will have to learn not ot drip it in my soup!

Dreamy

Yes LaGata I am stage 4, have just about always been stage 4, was dx in Dec 2005 and stage 4 dx Jan 2006. Have mets throughout spine and hips, liver and lungs. I have new mets in the general area of my right kidney and a new one in a lung. Switched from tamoxifen to femara to see if that would bring estrogen levels down and had my ovaries radiated to stop them from producing hormones. So hopefully will go back to being stable. 3 years out of the chemo lab was wonderful!

shirl5alive

Hi I am experiencing lymphodoema too, and I have the compression garment and wrap at night. I do the massage exercises to help move the lymph. Are those the exercises you are talking about?

Dreamy

Ok I have found the miracle cure. But you cant tell anyone... its very hush hush..... its swimming. Not olympic gold medal swimming but aquatic exercise swimming. The whole arm is improving and there is a wrist.... where before there was none and before that there was a slender one. Keep it in the dark but do it toooooo!

Det

I'm Stage IIIC, still in treatment (I'm having a mastectomy on July 2)--all my lymph nodes under my R arm have been removed. A physical therapist at my hospital told me about an exercise class--it's called The Lebed Method. I encourage you to do a search online and find out about this class--perhaps there's a teacher in your area? It's designed for people working w/ lymphedema, people who have autoimmune disorders, things like that. I know I won't go to this class for a while after surgery(!), or probably during the radiation I'll receive after that, but if I can, I expect I'll go to this class the rest of my life. If it's not available in your area now, doesn't mean it won't be later on! Meanwhile, sounds like you're getting some great ideas. Later I hope to do swimming at my nearby public pool regularly; originally my hair was long and thick and brown--now, post chemo, it's short and gray--but I figure this is a great time to try swimming, since I don't have that much hair to dry! Much luck to you in all your endeavors.

mom2acat

Dreamy, I'm glad to hear you are doing better!

mrsmas

I'm sorry to hear about your lymphedema. My mother left her lymphedema untreated and it eventually developed into elephantitis. Regrettably, her arm never got any smaller. You can imagine my paranoia last week when I was diagnosed with a mild case of lymphedema. In a panic, I immediately wrapped it with materials I secured from the surgeon and kept it elevated for several hours. I found a youtube video on how to wrap properly:
http://www.youtube.com/watch?v=tDCwTodmGqE&feature=PlayList&p=4DD7885018AC1 01D&playnext=1&playnext_from=PL&index=7
My clt tells me that such wrapping is extremely aggressive, but it worked insomuch that by the end of the weekend my arm swelling had reduced to what I believe will be the minimum it will ever be again. I'm being fitted for a compression sleeve on Friday, but I'm not a candidate for massage or the pump because of my CHF. I also found a hospital that gives free bright pink wrist bands at http://www.lymphedema.com/alertform.htm. Good luck!

Dreamy

I have one of those bright pink wristbands too. I keep it looped on my ever packed hospital bag. I exchange my medi-alert bracelet for the pink bracelet.

Nurses have commented positively about the pink bracelet. She said that every one with lymphedema should have one.

The swimming was interrupted due to the strike but now I am back to once a week. I go with a friend so laziness is not a factor. Afterwards we go to Tim Hortons for soup and donut. Its the only time my appetite is craving anything. So we roll with it.... haha ... you get a roll with the soup.

The lymphedema is better. Not measurably better but better. I have fingers and dimples where my knuckles used to be. Its still embarassing because the large arm forces me into large and extra large sizes while the smaller arm would have me in a medium.

I am making my own clothes for something to do and can adapt for the extra size. Now that allows me to do some clothing design for myself. One of a kind outfits. Some are stunning and some are uh-hem a disaster. But mostly they are tops and skirts that look good anywhere.

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