lymphoedema

[lia]

I appreciate that this may not be the appropriate place to post this but I really have learnt an awful lot from this site and was wondering if anyone can help.I m in the uk and my family doctor confirmed yesterday that i have developed mild lymphodema (sp? ) in my arm. I d suspected it for a few weeks but when i saw my oncologist for my first herceptin infusion 2 weeks ago he said it was just how my arm was ! Anyway my gp said it would have to get worse before anything could be done, an approach i m not happy with so i m seeing a private MLD therapist next fri. In the mean time can anyone direct me to any good resources, particularly alternative or complementary ones or supplements that might help ? Thankyou in advance, I go back to work next tuesday (been off since march !) at a new school and am now wondering how i will cope !

[lu ann]

Dear Lia, I'm sorry to hear of this new battle you are facing. I don't have anything but prayers to offer you, but I know there are many on this board that can assist you. Don't ever think your not posting at the right place. We are here to help each other. I will pray for you. Blessings, Lu Ann.

[Becky]

Lia

Below are some recommendations from the Lymphedema network on what to do to avoid lymphedema or help it not to get worse. I recommend seeing a physical therapist who only does therapy on the arm and massage but ONLY does lymphedema.

I fly with a compression cuff to avoid it and use the cuff when hiking (to avoid thorns etc going into the arm etc or when driving long distances). Once it starts, it is difficult to have it go away.

Keep asking questions here on anything. We are here to help.

Best regards

Becky


I. Skin Care - Avoid trauma/injury and reduce infection risk

1. Keep extremity clean and dry.
2. Apply moisturizer daily to prevent chapping/chaffing of skin.
3. Attention to nail care; do not cut cuticles.
4. Protect exposed skin with sunscreen and insect repellent.
5. Protect exposed skin with sunscreen and insect repellent.
6. If possible, avoid punctures such as injections and blood draws.
7. Wear gloves while doing activities that may cause skin injury (i.e., gardening, working with tools, using chemicals such as detergent).
8. If scratches/punctures to skin occur, wash with soap and water, apply antibiotics, and observe for signs of infection (i.e. redness).
9. If a rash, itching, redness, pain, increased skin temperature, fever or flu-like symptoms occur, contact your physician immediately.

II. Activity / Lifestyle

1. Gradually build up the duration and intensity of any activity or exercise.
2. Take frequent rest periods during activity to allow for limb recovery.
3. Monitor the extremity during and after activity for any change in size, shape, tissue, texture, soreness, heaviness or firmness.
4. Maintain optimal weight.

III. Avoid limb constriction

1. If possible, avoid having blood pressure taken on the at risk arm.
2. Wear loose fitting jewelry and clothing.

IV. Compression Garments

1. Should be well-fitting.
2. Support the at risk limb with a compression garment for strenuous activity (i.e. weight lifting, prolonged standing, running).
3. Wear a well-fitting compression garment for air travel.

V. Extremes of Temperature

1. Avoid exposure to extreme cold, which can be associated with rebound swelling, or chapping of skin.
2. Avoid prolonged ( > 15 minutes) exposure to heat, particularly hot tubs and saunas.
3. Avoid immersing limb in water temperatures above 102° F.

[StephN]

Dear Lia -
You will not regret having taken the bull by the horns. Your docors are very ignorant about lymphodema, and you are right to be proactive.

I know a couple of women who were misguided that same way your docs are trying to misguide you. They now have terrible lymphodmea and have to massage and wrap their arm every day - this takes a LONG time to do. Then they have to get up at night and do it all over again if their pinky fiinger goes numb or anything else is not quite right. A really royal pain!

One nurse I know caught it early and mostly wears the sleeve and sometimes the glove. But she can't use the glove all the time as she needs to use the sterile gloves constantly for her work at the hospital. She measures her arm every day and keeps track of the size in millimeters!
Another nurse I know had no trouble with it for 6 years after her mastectomy. She was on a hike and fell and after that she has had to mess with her arm - all from a bad bruise!

[Lyn]

Hi, I had a lymphoedema nurse show me the so called correct way to deal with the treatment, feather touch, what a load of garbage, I think this is a myth. I spoke with a surgeon and he said that the rougher you are getting the fluids in the arm moving the better. I proved this to be correct, I did a stupid thing, I don't have any veins worth touching in my good arm so I always have my bloods taken in the other, no problem so I decided to have the nuclear dye in that arm as well, so after the CT and then the Bone scan, I woke up with my arm and fingers looking like a big, very big, huge pork sausage, I was so mad at my arm, I started pushing the movement from my fingers up to my shoulder several times, then put on the arm gargment, I didn't have the glove so I wrapped around a wrist finger support tightly, I took 2 flaxseed oil capsules and when I got up in the morning only a slight puffiness so I wore the garmets for a couple of days to make sure and back to normal, or as normal is, in a couple of days. Should of mentioned I spoke to the surgeon after I did this, so I was one step ahead of him, my opinion, how can feather touches move a river in your arm, not possible I'm afraid. Spoke to another lady who did the same thing, she had worn her garments for months, then tried this technique and hardly ever has the need for them anymore.

Love & Hugs Lyn

[sarah]

Never carry anything heavy with that arm, if you prick that arm or hand - immediately disinfect it, (you must be obsessive about this), you will need special physical therapy for the problem but an exercise you can do is put your arm straight up above your head as if you were reaching for something above you and then make a tight squeezing fist then open the hand and and then repeat the squeezing fist - this should be done several times a day to get the blood pumping in the right direction - away form the hand towards the underarm. good luck. you certainly don't want it to get too bad.
sarah

[Sandy H]

I have had chest wall lymphedema for 4 years now. I don't have it in my arm but I do see a specialist at least every 6 months for follow up. I go into treatment if necessary. I have managed it very well but it is lots of work and one needs to be deligent in keep it stable. As for diet avoid salt and drink lots and lots of water. Never lift more then 5 pounds with the affected arm (a gallon of milk is 5 pounds) Exercise is very good although my lymphedema specialist says she does not recommend weight lifting. I have been to several specialist and they are all in agreement. One can damage the skin and tissues if too much pressure is used trying to move the fluid. It needs to be very gentle. Any cuts or scratches on arm and hand need to be watched so that one does not get cellulitis which is very serious and can happen immediately after an injury. I wear a jobst sleeve daily and take it off at night for maintenance. Massaging works well in the shower with the water running down the arm. Make sure the nodes are stimulated. Keep arm raised when riding or even just sitting down. Avoid hot showers, sauna, hot tub. No repetitive use of arm such as stirring, knitting, crotching etc. for long periods. Yes, it really sucks to have lymphedema but can be managed. One should wear an ID bracelet on the affected arm letting EMT's nurses, doctors know that there should not be any BP, blood taken from the arm. They call it a dead arm!! Good luck, hugs, Sandy

[SandyBB]

I had severe lymphedema in my arm this past winter. A deep cat scratch, although treated with antibiotic ointment and a bandaged, caused my entire arm to swell painfully. It was six times larger than the right!!! I was referred to a registered/certified lymphedema specialist and had to go 5 days a week for therapy for two months- the massage is gentle - the reason being that the lymph vessels are delicate structures just slightly below the skin level. The delicate massage is not to necessarily move fluid, but to stimulate the lymph vessels to drain themselves without causing damage.
My arm was totally bandaged up like a mummy every day and only removed in the morning for my shower and then rewrapped after the massage by the therapist. It was no fun - it didn't really hurt, but my bandages were so bulky I couldn't even reach my nose to scratch it!
I was measured for custom compression sleeves and a Reid Sleeve (a clumsy device that can take the place of bandaging.) I wear a compression sleeve every day for the rest of my life, most likely - when I go without it, my arm starts to swell. I used to wear the Reid sleeve at night to bed, but am able to control the swelling with just the compression sleeve - except in really hot weather or if I have an arm trauma.
The key to managing lymphedema is to MANAGE it every day for the rest of your life... if you are not aggressive in preventing/reducing the swelling, it can become quite ugly.
BTW - one way to know if you have lymphedema is to press your thumb into the area - if a white indent remains in the skin once you remove the thumb - you got it.

[Lyn]

Hi Sandy, as usual I must be a freak, I got rough with mine and the result is I don't need to wear a garment, I got so angry with it being ugly I just wanted it moving, like always we are all individuals, I did the gentle thing for so long and didn't get any result at all, the surgeon who dictates his belief was the one who did my original surgery and he recommended a masseus who did it his way, like I said the lady I knew wore both of her arms all wrapped up with the garments for the whole time I had known her, it was weird seeing her without them. different folks different strokes.

Love & Hugs Lyn

Lia, what kind of compression sleeve do you wear for flying? Where did you get it? Is it custom made or off the shelf? What brand?

Sorry for all the questions!

[Roz]

I had my op August 2003. I had mild(ish) swelling almost straight away, something to be expected I suppose when one has had a lot of nodes removed. However, it has never got any worse, altho sometimes in summer (very hot and humid here in Oz) it swells up a little, but then goes back down. Same if I work long in the garden or go gangbusters with the grandkids. i also wear a sleeve for flying, however, I forgot both when I fllew home from Bali (6 hour flight, me horizontal sleeping most of the time) and again when I flew to Hong Kong(9 hour flight). But i would recommend the sleeve, it has worked well the other times I have worn it! Keep an eye on it but be positive as well.

[Lolly]

I also have mild lymphedema in the left arm from the mastectomy and lymph node dissection. I wear a compression sleeve called a Juzo, and was fitted for it by a specialist at a Medical Prothesis supply business. I acutally don't wear it every day, some days I don't need it, but on others I can feel that the arm is heavier than normal, so I'll wear it or do the exercises Sarah describes to bring the fluid down. Also, I sleep with a pillow under that arm. I think this has been especially helpful, keeping the arm at chest height while sleeping. It sounds uncomfortable, but I've gotten quite used to it. If you sleep on your side, just lay the pillow lengthwise next to you and rest the arm on it that way.
This condition is manageable, as the other girls have said, you just have to learn how to take care of it!

<3 Lolly

[StephN]

Hi -
I got an "off the rack" model by Juzo.

You can get them at medical equipment supply places. Just call and ask what they have. Mine is soft and has two-way stretch, and fits from wrist to shoulder. I use it as a precaution. I am sure you can do a web search for "compression sleeve" and get hundreds of pages!

[Becky]

I have a fitted Juzo as a precautionary. I use it for flying, driving long distances and hiking (so thorns etc don't get me). I also use it as we breed paint, thoroughbreds and thoroughbred cross horses. There are feed bags, shavings, hay bales - I don't overdo (but what does that mean). So when I'm out there, I wear it. I have 3 cuffs so I can have clean ones around (phew).


Becky

[Sandy H]

Lyn I am happy this worked for you. However, its not anything I would dare try. I do not have lymphedema in my arm but on the chest wall. I do wear the jobst sleeve to prevent swelling most of the time. I don't wear it when I go out unless I am doing shopping and carrying packages. The doctor had me get a disability form for handicap parking as he said I should not be pushing a shopping cart across the parking lot with groceries in it!! This is my oncologist. I was rather surprised because most of the time they know nothing about lymphedema. Good luck to you. Like you said different strokes for different folks. hugs, Sandy

[Lyn]

Hi Sandy, I too have a disability parking sticker, mainly for my heart, but I get sick of the disgusted looks I get if I dare park in one. If there is an alternative park I will take it, one old man was quite rude and abusive and his wife told me not to let him upset my day. This was when I was at the hospital going to get chemo, not that I needed to justify my self but I told him that I would gladly move to the park behind me and told him I was going to chemo, he said so am I hope you have a sticker, of course he was a liar as well as an arrogant creap. And yes he did upset my day, but not as much as he upsets his wife every day by the tone of her caring voice trying to apologise for his behaviour.

Love & Hugs Lyn.

Hi,
I have mild lymphodema. I wear a sleeve regularly. I also have a compression machine for lymphodema. It works well. I did try physical therapy with wrapping up my arm but it was time consuming and not practical for me and my lifestyle.

[Roz]

I agree, Lolly. I use a pillow sometimes at night. I lie on my side and put the pillow beside me and stretch my bad arm across it. it helps considerably after a day when my arm feels "heavy' as you say.

[sassy]

I would be interested to know how many nodes those of you experiencing lymphodema had removed. I guess there is no magic number, but would like to get an idea of how many were removed. Thanks in advance for sharing your information.

Sassy
________
CHERISEXY LIVE

[Sandy H]

I wear jobst sleeve off the shelf. I have also had custom made ones but the jobst works for me. I get some puffiness in the upper arm and so I do wear a sleeve. As for flying I do wear the jobst and a glove because lymphedema starts in the hand and goes up. Need to leave the glove and sleeve on for 3 or 4 hours after landing unless you are use to wearing a sleeve all the time except for sleeping. Everyone is different so you need to go with what your lymphedema specialist tells you. I have been to 3 different ones and I find they have all been consistent. Now, Medicare does not pay for sleeves in case you have medicare but it sounds like you don't if you are going back to work. I don't understand why they won't because it is very important to keep it under control. They will pay for bras and prostetics (? sp) go figure!! hugs, Sandy