What started your lymphedema?

Mine started when I was switched to a laptop computer and was given a shoulder bag to carry it between home and the offices I worked at. The bag itself was almost as heavy as the computer. Then there was additional weight from the paper files I had to transport.



Two weeks of that and suddenly my hand looked like a pudgy baby's. Then I noticved my forearm was larger, too.



I immediately bought myself a computer bag on wheels, but the damage was done.



That was in March. Just got told this week that I will be let go in two months.

Oh, Lisa, that's a terrible story! Makes me want to beat my head on a wall! Irony is fine in novels, but we shouldn't have to live it to quite that extent.

And Nancy, I'm just sick about your job loss, especially since it was your job that triggered the LE. Really, reading this thread so far is enough to make me weep!

Both of you, "Ironic LE" should be a special category, probably best treated with larger-than-usual doses of chocolate. Take as needed, please...!
Binney

Mine started with chemo, and from the reaction of the oncs it was not the first time they had seen this happen. The chemo was taxotere and it caused several of my veins to collapse, even on the opposite side of the IV.

With ongoing PT through the remainder of treatment, I managed to get the swelling down. It still flares, and I have to be careful, but so far, knock wood, I feel I have been lucky as LE goes. 

I have no idea what triggered my LE.  My arm started swelling about the time the cording went away, about a year and a half ago.  The swelling never went down, but has not gotten worse either.....So I keep doing my MLD and excercise in hopes that it does not get bigger.  I'm even going to try wrapping AGAIN. 

I sure wish I knew what triggered it so that I could hopefully make sure that does not happen again and protect my at risk arm from developing it.

For my left arm: about 8 biopsies near the armpit ( 5 additional throughout the breast), bilat mastectomies, removal of 6 Sentinal nodes due to " clumping". Too much monkeying around in the underarm area.

For my right arm: airplane flight NO DOUBT. Swelling w/in an hour upon landing. I think the nodes w/in the breasts

(not necessarily the 6 SNB) that were gone were needed by me to operate normally.

Jan, long story short: the lymph system circulates throughout our bodies like our blood does, but the vessels that carry the lymph fluid are practically invisible because the lymph is not brightly colored like our blood is. The lymph vessels carry lymph fluid (which they collect from the tissue among the cells) to the nodes, which are also throughout our body but are especially numerous in our axilla, groin and neck. The lymph fluid is full of waste products and toxins, like bacteria and other garbage that it picks up among the cells (kind of like a garbage truck). When the lymph fluid reaches the lymph nodes the nodes kill off the bad stuff. Then the cleaned-up fluid is returned to circulation in the body.

Lymphedema is a plumbing problem. Removing or damaging the lymph nodes with surgery or radiation (or blocking the lymph vessels with scar tissue) causes a back-up in the smooth flow of lymph fluid. When the excess fluid can't be efficiently removed from the tissue in the arm, it swells up. Ditto for the breast or chest.

But it's more than a plumbing problem too, because the fluid that can't get out of there is warm and protein-rich, so it's a perfect environment for bacteria to grow--which means it's extra-easy for us to get an infection. Even from a paper cut, a hang-nail, or a mosquito bite. Because the large protein molecules are also irritating to the tissues, it also means that our body creates fibrosis (hardening) and abnormal fat deposits below the skin in an effort to protect itself from the irritation.

Since all of us who have been treated for bc have compromised lymph systems, we have to be careful of those things that can trigger it. Because it's a plumbing blockage, that means we have to avoid anything that's going to:

1.) Further block the flow (like carrying a heavy purse over your shoulder and "mushing" the lymph vessels that are right under the skin), or

2.) Cause our body to dump more fluid in the affected area, thereby overwhelming the compromised plumbing.

Since any injury to our bodies results in more lymph fluid being delivered to the wounded area (so it can gather up the "garbage" and take it to the nodes to be neutralized), even a small injury can overload the lymph system and create a back-up (lymphedema). Also, heat brings more fluid, as does extreme cold (remember how your hands swell once you get inside after a snowball fight?). Certain drugs also cause fluid to accumulate, the taxanes among them, so those too can overwhelm the system. Infections cause not only swelling but further damage to the lymph vessels, so they're a risk too.

So basically, it's sort of amazing, isn't it, that by most estimates LESS THAN HALF of the women treated for bc ever develop LE! 

I hope that helps. Be well!
Binney

Chemotherapy (Taxotere) caused body-wide swelling, resulting in accentuated axillary web/cording/swelling in the cancer side arm.

Jan, you should definitely avoid carrying your purse on the affected side. I was told this by my doc as well as LE prevention.

Why would your husband care on which side you carry your purse? 

My surgery was in Feb-2012, and 2 weeks of stretching/exercises, my range of motion was back to normal - no cording, nothing. Then in May-2012, I washed some winter jackets to put them away. I guess carrying them from the washer to hang dry some of them was heavier than my arm could take. My arm started feeling numb/tingly for about 2-3 days, then the axillary web syndrome (cording) affected my range of motion - I felt like I was post-surgery again. Then my arm started to swell. I started my stretching/exercises again to reduce my cording, and it has improved. But the swelling comes and goes.

Can anyone please tell me if this is normal? Is this going to be an ongoing struggle?

Any tips to prevent LE? 

By the way, the arm tiredness can be a Stage 0 indicator.  I've had this.  It can also be nerve damage, which is extremely common with SNB.  I still have numb spots on my back.

Pooh, reach out to Kira and Binney.  I'm afraid you may already have LE, but I've heard early swelling can be reversible (meaning, your arm won't permanently swell).

Thank you so much ltotek & binney for the information. I left a message with my oncologist's nurse, I hope she can refer me to a good therapist specializing in lymphedema and cording. I really want to deal with this soon, so scared that it might be with me long-term, feel like such a handicap these days.

It seems that the best women to talk to and learn from are those who are going through similar experiences. I'm so glad I found this forum, and other cancer survivors to get through this journey.

Take care everyone. 

Dianessa: I am so sorry that this happened to you. But I am happy that you have us girls for support.  I don't know if you have posted before but If you have questions some of our much treasured girls, Binney and Kira will come along and help. Don't worry about the typo's, many of us type with wrapped hands and typing is not a easy job that way!

Yes, A lot of us girls have had to educate our doc's including my nuerosurgeon who said, " I thought you only get that right after surgery"  or my MD, when I mentioned about watching out for LE said, "OH... you'll never...get that". Well I did, about 4-5 years after surgery. Good thing I educated myself and scaned these LE threads along the way to being self diagnosed. Still I feel very sorry for the girls that are not informed.