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

20 nodes removed. I had trouble with swelling and a constant ache starting with radiation therapy. Wore a Jobst sleeve daily for 2 years. I started an exercise program which included some work with weights and it has helped tremendously. I also had some axillary scar massage done by a physical therapist that must have opened up some of the lymph channels. This was vigorous stretching and tugging, not the light lymphedema massage. Anyway I no longer need the sleeve. I occasionally have some mild discomfort but nothing like it used to be. Hope this gives you hope.

[StephN]

Hi ladies -
I am going to start a new thread, but went back and read this one as it is full of GREAT info.
Thanks to all of you for getting me to think about something I had been ignoring!

P.S. I had 18 nodes removed - 8 were positive.

[Kim in CA]

I am almost 9 years out from my surgery and had 36 nodes removed. I have done everything you shouldn't do with that arm, including even letting a tech talk me into using that arm for my PET scan. Most recently this year, I have been lugging around 6 gallon water jugs and lifting them into the back of my pickup. I know they weigh 50lbs each. In fact, I have to carry one in each hand to keep from tipping over! I never realized I shouldn't be doing this, and thus far, have never had lymphodema. My right arm/surgery arm has always been a little bigger than my left arm, but it was that way even before my surgery. I attribute that to the fact that I am right handed, in fact totally right side dominant, and can't do anything with my left hand.

Well, as usual I am feelling like a dork and can't believe how out to lunch I've been on this one! The hard part will be finding a way to accomplish the things I do without using that arm so much. Once again, saved by the board!

Kim in CA

[Rachel]

Hi

I was wondering whether anyone can advise me on cellulitis. My mother had breast cancer two years ago and had a lumpectomy and radiotherapy. She has had cellulitus twice since then the last time being over christmas when it was really bad. She had it in her right arm (where she had lots of lymph glands removed). Now she has just developed it in her right breast. I am so scared for her as that was the breast she had the cancer in. I was wondering if anyone can relate to this or any advice on treatments or anything really. I would be so very grateful.

Thanks

Her daughter Rachel.

[SusanAnne]

Hi Rachel,

You don't say if your mom has been diagnosed with lymphedema and what treatment she's had. Anyone who has had lymph nodes removed must be very careful with that arm/leg. Any cuts/scratches/insect bites should be tended to right away with an antibiotic cream and covered. You also have to be on the lookout for any redness to catch an infection early. Your mom should always have on hand an antibiotic (what if it's a weekend) to start treatment ASAP should she discover anything and then get to the doctor to be followed closely. Hope this helps.

Susan

[Rachel]

Dear Susan,

Thank you for replying to my email. She hasnt been diagnosed with lymphadema, it is cellulitis, she is in hospital and is having antibiotics through a drip. The last time she had cellulitis she had it in her right arm but now it has appeared in her right breast, where she had the tumor. I was wondering if it is a worry that it is in the breast. She is on arimadex and has been wearing an arm band protector everyday. She has been so careful but I guess when you have had lymph nodes removed you are prone to this repeating!

Thanks again.

Rachel

[SandyBB]

Rachel, cellulitis such as your mom's, and with her history, is usually caused by lymphedema. Lymphedema results when there are too few nodes in the area (i.e. removed during the cancer surgery) or when the nodes are damaged from radiation. Lymph fluid can not travel effectively through the lymph vessels in the area and this can cause the arm (or breast or underarm area) to swell. If the fluids continue to build up, they can become infected and turn into cellulitis.
This happened to me last year after a bad cat scratch - lymph fluids are used to battle infections so the cat scratch activated the fluid production but the nodes I had left in the area are damaged from direct radiation so the fluid did not flow correctly and ended up backing up in my upper arm, causing an infection. In my case, I was put on strong antibiotics and began aggressive lymphedma treatment once the infection had cleared. (see my previous note in this thread).

I am not sure if you were inferring this/afraid of this, but cellulitis has NOTHING to do with your Mom's cancer returning. It is a serious condition and will mean she needs to also aggressively treat her lymphedema, but it in NO WAY is related to her prognosis of staying cancer free.
Take care,
Sandy

[Rachel]

Dear Sandy,

A big thank you for responding. Your advice has really helped me to understand cellulitis and lymphedema. I am going to see my mum in hospital tomorrow so I will pass on the thread to her.
I guess so many changes have happened since the BC it is sometimes hard to keep up to date with what everything is and why it is there!

Thanks again

Rachel