Lymph edema Risk and Drinking/Travel/Sleeping on side
Hello!
I am new to this board. Recently had mastectomy with 21 nodes removed so am at high risk for lymphedema. My PT told me not to drink alcohol, ever, or to sleep on my affected side. I have read and understand the other risk factors, but those seem a bit... Mixed. Online research doesn't say anything conclusive. What have others heard?
Also, my family lives on another continent and the thought ofnot seeing them again due to restricted travel really makes me sad. How Do you cope? Between the mastectomy, chemo, radiation, and now this risk....augh!
Jo
Comments
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Hopefully you won't get LE. Many at high risk don't.
I have mild truncal LE that is now well controlled. I drink a little. No matter how hard I try not to, I now always wake up and find myself to have slept on my BC side, my preferred side most of my life. Earlier my breast was still tender from rads and that usually stopped me.
So even though I already have LE, neither of these seem to aggravate it.
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Here is an old post I wrote on LE (on an exercise thread, which is why there is so much about exercise in it), maybe it will be helpful for you:
I had 11 lymph nodes removed, so this (LE) has always been an area of real concern and mindfulness for me. When I had my surgery, there was no one around here to go to for advice, so I did a lot of studying on my own. Here are some thoughts & tips I came up with.
First, I think that whether or not you are prone to LE has mostly to do with how your lymph system handles trauma. I would say most cases (unless you are in a horrible accident or are doing really extreme activities) are neither through any virtue or fault of your own; just a matter of good or bad 'luck'.
That being said, there are many 'little' things that we can do that may reduce the risk of developing LE or minimize flares (these are for people with SNB too):
- No BP, IVs, needles, shots etc. in that arm....consider getting a medical ID bracelet (to wear when traveling anyway). There are some really pretty ones out there that look like jewelry (I have a good website if you want it)
- Wear gloves when doing yard work, gardening etc.
- Wear sunscreen when out in the sun, bug spray when out with the bugs
- If you get a cut, scrap, bite...wash it with soap/water and slap on a bandage. If you see any sign of infection, get to the Dr. & on antibiotics ASAP
- Be sure to switch arms when carrying your purse, hauling around anything heavy, dragging luggage etc.
- Be careful about saunas, I avoid them, and also manicures and massages (on that quadrant of my body anyway).....not everyone does, but that's just me
- Keep a healthy weight
- Keep hydrated, limit alcohol
- Don't wear tight rings, watches, bracelets on that arm (when flying, I put my rings on my other hand & leave them on that side fro a couple hours after I land or don't even bring them along at all)
- Also, be sure to keep well hydrated when flying, move your arm around a lot, make fists etc. get up & walk around the cabin (which won't be a problem if you are well-hydrated because you will have to go to the bathroom!), if someone wants to help you hoist your carry on & off the overhead, let them.....maybe think of checking heavy bags....
- When exercising that arm; start very slowly, take your time...build up weights very slowly...don't skip levels...don't do too many reps in one session. Mix up your exercises, don't work the same muscle groups every day. You may want to work with an experienced trainer (or PT) to help you construct a balanced program.
- One thing I do want to add; after my surgery I was scared to start doing upper body. Neither my surgeon nor my oncologist could give me any good solid advice, so I talked to my GP. What he said was that I DID want to exercise my upper body, that it was important to do so as it would actually build up the lymph system, and although, of course, I should be careful and notice if my arm felt heavy/swollen etc. that I shouldn't be afraid to have it feel a little 'normal' soreness...because anytime you exercise a part of your body that you haven't been using for awhile, of course, it will feel sore. That made sense to me, and gave me 'permission' to get moving.
That was my original post, now I will add a couple other thoughts. I understand where you are coming from because in the beginning, I think I was almost as afraid of getting Lymphedema as I was of actually dying....yikes. But a couple things happened; one was time passed without me developing LE, and second is that I got to know several people who had developed LE and saw that even though it added something that was a hassle to their lives; they kept on living, exercising, traveling.....doing all the things that make life enjoyable.....despite of it. So, be mindful but don't let the thought of it rule your life. If it doesn't happen, you will have wasted all that energy worrying for nothing, if it does despite sensible precautions, then you will deal with it at that time. -
Jojobird: Ruth gives very good advice. I never heard that about drinking causing a flare. MAYBE sleeping on that side could be bothersome for some people, but not for all. The risk factors are not a certain thing,,,, what sets off one person, could not affect someone else. Yes, you are higher risk than some,, but hey, I only had 6 nodes out and got it. There are many on here with a lot more out than me ,, and they haven't developed it. Go figure. Take precautions,,, but don't let it stifle your life any more than necessary.
Check out stepupspeakout.org for a LOT of lymphedema advice too.
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One of North Dakota's two U.S.Senators had BC many years ago. If I remember correctly, she had over 20 nodes removed. I don't know if she ever developed LE or not (as she has never said so), but I do know she travels all over the country, and all over the world on fact-finding missions, for political gatherings etc. so what you are going through now does not preclude an interesting, rewarding, and active rest of your life!
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Hi, Ruth - You mentioned a good site for medic alert bracelets; would you mind posting that? Thanks!
Jojobird - I completely understand your concerns re: lymphedema. Since surgery and radiation I've flown 2 eleven+ hour non-stop trips without any issues; I did use a sleeve and gauntlet and used common sense precautions such as Ruth's outlined above. I do find myself sleeping on my "bad" side as well. So far, so good. I'm still leery but I'm learning (slowly) not to let it rule my life.
Good luck to you as you find your own comfort level with all of this garbage! Do NOT let it keep you from visiting your family!! -
I get medical ID bracelets at http://www.creativemedicalid.com/ (I frequently get compliments on mine as a piece of jewelry!)
They give you information on how to measure & inscription suggestions for various conditions, mine says: "No IV, BP, needles in left arm"
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Just a caution about getting bracelets that look like jewelry... When the paramedics came out last month when I had chest pain and trouble breathing, I had such a bracelet on. They didn't even look to see what it was probably because it did look too much like jewelry. So I got one that doesn't look so jewelry but not bad AND has the writing on the front. I don't get having the tiny writing on the back. Esp for lymphedema, it's not like other diseases where you can wait a bit to read it. First thing EMTs do when they enter is go for the arm. In my case, the wrong arm but I was too busy trying to stay alive that I didn't put it together until later. Already most medical folks have no clue about lymphedema.
I got this. Writing is still too small in real life but at least it's in black and on front- and the bracelet doesn't look like jewelry you'd buy so better chance If I'm unable to put forth my right arm, they would read this. There's one for the right side too.
http://www.ebay.com/itm/131699566434
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how does one not sleep on LE side when they have screwed up other shoulder. I start on back and wake up on LE side,impossible unless you shoreyourself up with many pillows restricting yourself.
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Thanks Ruth & Artista - you've provided useful insights. I've been thinking that maybe an ankle bracelet would be preferable to a bracelet but wonder if emergency personnel would even see it. Any thoughts?
Hugz - I found that having a pillow cushioning that side helped in the weeks after surgery, through radiation and beyond. If you get it right, it really helps keep pressure off the area without being too restrictive but it does take some experimentation, for sure. Good luck; I hope you get it figured out soon!
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Thank you all so much for these words of encouragement!
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They didn't look at the arm bracelet so no way for ankle. I'd stick to the arm.
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There's also a good chance that because of the amount of nodes you had removed, you won't ever develop it. I visited a PT once who taught me some massage exercises in case I ever felt like I was developing it. My surgeons also told me that even the # I had removed--11--, from what they've seen through years of practice, probably wasn't enough for me to get it. Odds were low, they said.
I have stayed lean since dx (I was fit already), continued to lift weights regularly since dx, flown to Ireland and Iceland from Phoenix as well as Hawaii 3x and other places in the country with no problem whatsoever. I fly with a sleeve in my traveling backpack more to relieve worry than anything else, with the instructions for massage with it--like taking an umbrella or raincoat to ensure it doesn't rain,
But I've never used it once, knock wood.I always ask techs to take BP on the non-node removal side. I think once I might have forgotten to remind them and nothing happened then either. As for cuts and scrapes, I run rivers and camp/hike year round, and never had a problem. I don't wear gloves to do these things, and I've gotten my share of scrapes and cuts. I do drink wine and beer from time to time, and sleep on the node removed right side because I have tronchater bursitis in my left hip from Aromasin side effects and I can't sleep on that side without waking up with achiness!
I'm doing most of everything that you were told not to do, and I've had 11 nodes removed, and nothing has happened. I think it's good you are aware of it, but try to understand that the odds are you won't have to worry about it at all.
My big fear isn't lymphedema; it's recurrence.
Claire
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There are people who had 1 node out and got it and some with many and not. Since there is no cure and there is disability with it I act like I had many taken out. I still won't carry anything heavy on my left arm, even my purse. It seems to be a crap shoot as to what can set it off as well so I take every precaution I know to help avoid it.
I don't think it's a single event that leads to it. I think it adds up. As we age naturally our veins and such loosens up. That's why many of us get vericose veins. The same is true with lymphatic system. It doesn't form overnight. So while the tight blood pressure cuff on my left arm they did didn't create any visible problem, it adds up.
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Artista, is that the bracelet you had on when the EMT's came? Or is this is a new you've now ordered?
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It's the new one I ordered. I had on one that has beads. 4 EMTs come in. 2 are talking to me at the same time, 1 is checking out my guinea pig and one is doing bp on the wrong arm.
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I would also suggest that you wear the bracelet on the affected arm if possible by ordering a larger size, with a large enough alert insignia which is red, and don't use the word "lymphedema", but rather the "no needles/IV/BP" wording - my son is a firefighter/paramedic and before I had my bracelet engraved I asked him to survey his fire station, most had no idea what lymphedema was - he did because he is my son.
I have a gold bracelet with an elongated inscribable plate and the recognized alert insignia which is in red. Looks like this.
http://www.sportsmansguide.com/product/index/hampden-stainless-steel-medical-alert-bracelet?a=917489artista - lol on the EMT checking out your guinea pig! Glad you're ok but that had to be scary!
Also, I have flown a lot and not had problems. I am careful, always wear sleeves/gauntlets, and follow the precautions with hydration, moving around, etc. I have bi-lat lymphedema, with complete axillary clearance on the cancer side, but only a SNB on the other. There is no unaffected side to sleep on, but have not found that there is a problem with that.
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I've bough several more jewelry-like alert bracelets and they haven't stood up to not-very-hard wear. I want to get one of the more cuff- or bangle-like ones in black metal with a red insignia. I need to include diabetes info, too, so there's a limit on how small it can be. I have some with a chain but they don't go with my jewelry well. I wear them (and an alert necklace) on planes or foreign travel so it's really clear it's a medical alert.
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Thanks Artista. I almost ordered a sparkly, fancy-smanshy bracelet and was wondering if the might ever happen. Now, I know the answer. Thank you for sharing your experience, sorry that you had to experience it in the first place. Wow, 4 EMT's, we only get 2 here. And one of them checking out your guinea pig, seriously! Glad you are ok now.
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Yeah I did feel special! It's always 4. When I was at my friend's house and we had to call them, 4 came for her mom. I think in case they need help with lifting or moving things around too. One is working on you, 1 was asking me questions and writing down answers, one was by the door and one was admiring my pet. lol And it's a fact that all EMTs are cute. I mean I have never seen an ugly one! While I wasn't in good shape the EMT checking out my girl reminded me to make sure she has enough food and water before we go as I most likely wasn't coming back that night. So while struggling I loaded her up with hay before leaving. How sweet that he was concerned about my pet. I've seen articles on how firefighters will go back in to the house to get the guinea pig out. These animals are unfortunately seen as disposable so to see them risk their lives for this person's pet as well is awesome!
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I got one on Amazon with a red MedicAlert symbol on the front and my LE and antibiotic allergy info on the back. It was a twisted two-tone chain-link with lobster claw clasp--a real bear to fasten, and too small unless I added extenders--which made it too big. Then the clasps broke . So I went back to Amazon. Noticed a lot that said “Italian charm bracelet,” but they were all those that looked like skinny watchbands, with tiny emblems and are too difficult to change the beads. Then I saw one with dual lobster clasps....and it was a Pandora-style stainless steel cable with one plain lobster claw and one with a cap that unscrews so you can put charms on it. First time I showed it to the LE doc, who diagnosed me at Stage 0 (where he says I still am), he advised me to get one with a pink emblem, as EMTs and nurses don’t even think “lymphedema” or “breast cancer” unless they see pink. (He gave me an ugly pink hospital-ID plastic wristband). So I went back to Amazon and clicked on a link for www. LaurensHope.com. All they do is medical alert jewelry. They sell bracelets with and without plates and plates with and without bracelets, in a variety of materials. They made me an ID plate with a big pink caduceus MedicAlert symbol--and on the back, my name, “Lymphedema R Arm No Ndl/BP,” “Algy PCN, Sulfa, Cipro,” and two ICE phone numbers. I put a bunch of charms on it (Imitation Pandora--the real ones go on my real Pandora bracelet) that are personal to me: pink bc ribbon dangle, garnet birthstone bead, gold-plated cat bead, treble-clef bead, wine-barrel bead, little cappuccino cup (complete with latte art) bead, and scales-of-justice dangle. But the first thing you see is the ID plate with that big honkin’ hot pink MedicAlert symbol. (My real Pandoras also include dangles for places I love to travel--Eiffel Tower, Big Ben, Spain & Italy hearts; have lived--Empire State Bldg. with red apple dangle, Space Needle, Water Tower; globe, guitar dangle, passport dangle, black Murano cat, baby shoe with blue CZ, even a little moka pot dangle (complete with the little vent valve on the side).
I got some forearm cording shortly after finishing rads and thought I felt some upper arm tightness while up in the foothills near Mt. Etna in Taormina, Sicily (which resolved when we descended to the port where our cruise ship was docked). I got a sleeve & gauntlet per my BS’ NP’s instructions--to wear it for flights>4 hrs. (donning it an hour before takeoff and removing it an hour after landing, but not realizing how long a layover I had in Amsterdam, so I just kept the stuff on till we got to our hotel in Rome). I hadn’t planned to wear it for short and domestic flights, but I noticed some finger swelling on a 2-1/2 hr. flight from London-Geneva. So I wear compression for every flight. And because I got arm tightness when we had brunch on the 95th fl. of the John Hancock (the elevator ascended very quickly), I keep a set in my purse just in case. Because of that, and the Taormina episode, I played it safe and wore it while I stayed up in the Blue Ridge Mts. for a music conference. (I have patterned sets for various outfits). I was advised by my PT to wear compression for all upper body (and strenuous cardio) exercise--anything that sends blood to the affected arm. Also for playing guitar--just draping my R arm over the guitar body can put pressure on it--and repetitive arm work (whisking, lots of chopping, pot scrubbing, etc.). I also expect to wear it if it gets very hot outside; and I try not to get a window seat on planes in daytime. I found that once my swelling and radiation fibrosis at the lx site began to subside I could sleep on my R side (I need to roll over every so often to clear my sinuses, and I snore on my back), and it has no effect. And I do MLD every couple of days, and oftener when I feel my arm tightening because a storm front is coming through. I also am trying to lose weight, to get down to my pre-letrozole weight and possibly my pre-dx weight. I have also increased my water intake, limited sodium, and have about 3-5 oz glasses of wine a week when I do drink. I don’t limit caffeine.
It sounds like a lot of fuss & bother, but it really isn’t a big deal. BTW, my friend who had a bmx and is 50 lbs. heavier than me had 3 nodes out on ea. side, and her surgeon and nurse-navigator said not to do anything. The surgeon said “We treat LE with compression, so what’s the harm with doing BP briefly?” My LE doc (the top guy in the nation, founder of LANA, advised the drafters of the Lymphedema Treatment Act) says he normally never prescribes compression to someone with only 4 nodes out, but I should believe my body and trust what I feel. He also says it’s fine to get a cortisone shot for trigger thumb in my R hand, and eventually tendon release surgery (no need to be wrapped if tourniquet time is at a minimum and infection precautions--including pre-medicating--are taken).
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I wouldn't get the writing on the back. Mine had the clear red symbol on the front but EMTs still didn't notice it much less turn it over while you are "dying". I still have my large plastic thick band with large black font all in caps that says no labs sticks, no blood pressure this extremity. That's the only type of thing they notice really. Even in the hospital one nurse wasn't paying attention and was going for this arm despite THEIR tag on it. Wow.
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I wake up on my affected side. I try to stay off of it, but it just happens. I wrap my arm when flying or driving, that is one thing I know for sure that will make my hand puffy. Right now everything else is still a crap shoot as to well it helps or harms except for salt, I'm fairly sure about that one being a problem too.
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I really hope you don't get lymphedema!! I had 24 nodes removed on my diseased side, 4 on the non-diseased side. I developed LE within the first 3 months post mastectomy. As far as travel, sleeping on affected side etc., -I have always slept on my affected side even though it is not ideal. I continue to enjoy my 2 glasses of wine with dinner in the evening and I travel to see my family which is about a 14-15 hour day. I also had a lymph node transfer one year ago which has helped with my cellulitis infections. But I refuse to let this terrible LE dictate what I can and cannot enjoy in my life. I'm only going to get one go around here so I say do what works for you and keeps you comfortable and as close to your old normal as possible! Hugs and best wishes to you!
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Katiejane and others, thank you so much for the replies!! I am praying for no LE nut one day at a time. Just need to get thru chemo first. All the best to you all!!
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Jojobird, I was told the no sleeping on affected side right after surgery. For several years I struggled with sleeping only on my back or other side. Then I brought it up with doc, who said the instruction was only meant for the first months after surgery@@ Gee, thanks, dude, for letting me know.
I had LE during chemo & rads. it was not severe, but it was LE. I went to PT regularly for about a year and I started exercising quite a lot. I only rarely get a minor problem now. We basically managed to reverse the initial swelling. So know that even if you do experience some swelling, it need not become permanent or progress.
I drink and fly. I usually wear a sleeve when flying, just for protection. Staying hydrated is important, as others have pointed out. I do drink, but always make sure to drink water along with the wine. IMO, exercise is one of the best things you can do for yourself. Lymph fluid is moved around by the muscles working. Stretching, walking, swimming, very light weights or simply stretching out your arm to the side or over your head and clenching, unclenching the fist are all things I have found helpful. Staying slender can also help.
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There's lots of good advice here! My lymphedema kicked in during radiation & at completion I saw a massage therapist who had training in the field. She showed me a very simple clearing technique that I have used many times over the years( it's been 6). Extremely helpful! I avoid bp checks, blood draws etc on that arm, am careful about carrying groceries, heavy purses etc. I had a lot of swelling during radiation, used the massage therapist right after 3 x/ week for about 5 weeks - it was money well spent. I have rarely had a problem since & when I do it is quickly controlled by the technique she showed me.
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