High Altitudes also cause LE

Hollisterann

We all know about airline travel but...  While driving cross-country, I didn't consider the high altitude in crossing the mountains as a factor.  Be aware, girls, and pass it on. 

Binney4

Hello, Ann, and welcome to bc.org! Glad you found us (sorry you had to!)

Thanks for the reminder. I live in a huge valley, and my therapist always reminds me I need to wrap (or wear my night garments) if I'm driving more than half an hour from home in any direction!

Any long trip by car takes some added consideration, though. Hard to remember to stay well hydrated, stop often for exercise, breathe deeply, and watch out for salty foods. And take extra bandages along. And a first aid kid for scratches or bug bites. And that antibiotic prescription. And...

Good thing we all have each other to "travel" this road with!

Be well!
Binney

dreaming

I am sorry that I do not agree, I go every year to  a city in the Andes Mountains,that is 13 thousand feet, the airport is at 14.000; I wear my sleeve during the 14 hrs flight,but nothing during my stay, usually I stay 1 month, except 2010 when I stayed a year.

Usually I travel in country going to lower and higher altitudes.

 At MDACC I had asked and they agreed with me, wear sleeve during the flight, and not during my stay. I had 18 lymph nodes removed. I am a long term survivor.

kira66715

Dreaming: not all women with ALND get LE, the estimates are around 50% after 20 years, and the researchers who are following women find that most get it in the first 5 years.

We've had some very heated discussions about personal experience vs. global experiences and I feel a previous post said it the best: (I am not the author)

While I agree that the posts in a forum like this are going to be biased in terms of being mostly from people who have had problems, I think there is another psychological factor to consider.  Everybody wants their choices validated.  They want to think they have chosen correctly.  I think putting that in writing is a way of doing that.  If I say, "I had 12 nodes removed and I've allowed blood draws in that arm and not had a problem," I am putting my experience out there for others to see, but posting it may also be giving me some validation to support my choice.  I see this all the time.  People want to refute statistics with their personal experience.  Personal experience is personal experience.  Unless the person is lying, it's 100% correct, but one person's experience doesn't change the group risk or prognosis.  

An individual making choices and having a good or bad outcome doesn't change the observed risk for a group as a whole.

I'm very glad for you that you don't swell at high altitutdes, other women do.

Kira

Anonymous

Kira, I have a friend who lives near Denver who has been begging me to visit. I was concerned about the high elevation even before my recent flare. Once this has subsided and I have all the proper gear, I am considering going but still worry. I guess I would need to diligently wear compression, do MLD and all the other proactive things re LE maintenance. If I went for a week, I would think wearing compression the entire time would be in order, but I wonder if the body acclimates to higher elevation/pressure after a while?




As far as risk for getting LE, whatever the situation, even if it is only 1%, if you get it, you get it. Just because you never have doesn't mean you never will. And I mean that with all kindness, because once you have LE, you understand why being proactive is worth it. I wouldn't wish this on my worst enemy! It is lousy, lousy, and life altering. If you think wearing a sleeve and glove on a plane or high elevation drive is a PIA, you haven't experienced anything!

Binney4

Tina, yes, your body adjusts with time. I can drive to the mountains and remove the wrapping after an hour or two (though of course I use compression garments there just as I would if I stayed home).

Just like when we fly, even if we end up in a city at high altitude we can still remove wraps once we're settled there. Other travel concerns still apply, though: salty foods, weather changes, unusual activities or lack of regular exercise, lugging suitcases, insect bites, sunburn. No vacation from the LE self-care, but for sure a trip to a different altitude is a great get-away and manageable.

Dreaming, goodness, don't be sorry that you haven't had any problems yet with lymphedema -- we sure aren't! Certainly once you arrive at whatever altitude, you can adjust. You might want to rethink the in-country altitude changes, though, and opt for wearing a compression sleeve and hand protection (glove or gauntlet) -- no point pushing your luck when you remain at risk for life. Anybody on this forum can tell you it's really not worth the risk! (You don't mention hand protection. Here's information about why that's important with the use of the sleeve:
http://lymphedivas.com/lymphedema/gauntletandsleeve/
Hope that helps!)

Be well!
Binney

carol57

I have Denver on my work agenda in early May, so I am all ears on the question of constant compression vs. acclimate and then stop wearing compression.  I wear sleeve/gauntlet only during stress activities such as flying, weight lifting, wearing it for an hour or more before and after. 

My LE 'feels' more than it shows, except after flying when my truncal always swells visibly. Even with compression, I feel the LE kick up after flying.  MLD on arrival to hotel helps a great deal to calm down the heavy/tingly feeling in my arm, but sometimes the truncal swelling persists for a few days.

I do not own any night garments, and I know that I should not be sleeping in my sleeve.

So...if there's a precautionary argument for being in compression nearly 24 hours/day when at higher altitude, I would need to start working on a night garment now.  Know very little about them and I assume I'd need to get a script, right?  Or--would sleeping in good old faithful UA be a reasonable approach?

Dreaming, you are so very fortunate that you're able to move about the planet, up and down altitudes, without triggering LE.  As Kira said, although there's lifetime LE risk, your risk by now is pretty low; research suggests that after those first few years, your risk is about 1% yearly thereafter. Having said that, I know two women who got LE during their second decade after BC surgery, and of course, somebody has to be in that 1% each year.   Losing 18 nodes is huge LE risk, but you are probably one of the very lucky women born with what has been described as a 4-lane lymphatic highway.  You have some open lanes yet.  Some women here (including me) lost only one or a handful of nodes and voila...LE.  I guess we got one-way dirt roads for our lymphatic pathways.  I'm cheering for you because as a long-term survivor, you paid some serious dues along the way, and it's really wonderful that you have been able to travel as you do without LE consequences. 

Carol

carol57

Binney, you were typing as I was typing, and now I see that your experience suggests I can acclimate kinda quickly once in Denver.  Thank you, as always!! 

Carol

Binney4

BUT, Carol! If you're regularly having difficulty with the truncal LE after flying, you might want to try a Jovi or Solaris night vest (or even a day vest by one of those companies) to wear at night until you get it back under control. Or to wear on the plane, for that matter.

Yes, you need a script. When I get fitted for chest compression I make it shorter than my waist for two reasons: it's easier to breathe if your stomach isn't compressed, and I live in the desert, so less is more. I also take a deep breath before she measures the chest, as I do want to be able to breathe with it on. I have swelling near the top of my chest, but I have them cut a rounded neckline a bit lower than it seems it should be, because when you lie down in a garment it fits differently than when you're standing up. If the neckline is too high it chokes me in the night. I also ask for wide shoulders and prefer them to come down a bit off my shoulder like a bit of a cap sleeve, which helps deal with the back swelling. Otherwise I've found they tend to cut the armholes too big in back and I swell behind the axilla.

All that makes me sound like a complete fuss-budget, doesn't it!

Too bad!
Binney

hugz4u

Just want to chime in here. I am most certain that staying in Yellowstone parks 10,000 ft altitude this summer promoted my trunk LE and may have made my arm/hand LE arm worse. I did wear a sleeve/glove for 8 hours a day as I was latent stage and thought this would be good enough and that I would climatize.( I remember how uncomfortable I was going from 5,000 to 10,000 ft while touring the park each day, I felt like I was being squeezed) I was ignorant to the fact that an underamour tee-shirt would be a good idea, otherwise I would have worn one.  After the trip  within a couple months I measured bigger and I went from latent stage to stage 2 after aprox 5 year post surgery. 

Hard lesson learned. LE stinks and I would gladly give my eye teeth to go back to at least a latent stage. I now can't wear a bra and am encased in tight shapers and glove/sleeves 10-12 hours a day and am thinking night garments may be in order soon. I am too scared to even think about flying.  

All those that can "get away with it" please consider yourself lucky. I pray you never become a "swell sister." All said and done, I realize this is a personal choice and respect your viewpoints. Just want to give you my experience.

1WonderWoman

Most recently I was talking to my doctor about the potential for developing LE and it appears it is 20-25% lifetime.  I was just very surprised to find out that the potential to develop LE *never* goes down.  I though that perhaps the further I moved from dx, surgeries etc... it would go down but unfortunately that is not the case.  

carol57

Lizzy, the studies will about make you crazy.  I see 1% per year after year 3 mentioned quite often in the 'risk incidence' studies.  But I think that was just one study.  The inconsistencies are so frustrating--most studies only follow up for a short period of one to three years. They use very diverse LE definitions and diagnostic criteria, and they use different measuring devices. But one common thread seems to be, as you say, we are always, always at risk, lifetime.  Whether it's 1%, 5% or 15% at any given point does not deter me from taking that risk seriously, every day. 

I love your avatar, by the way!

Carol

carol57

Binney, thanks tons for the added ideas, and you are certainly entitled to be a fuss budget. 

If I get all of that accomplished in the next six weeks, it will be a miracle--script, fitting, get the garment in, fit-check.  Short sleeved Under Armour on top of shapewear cami, with a side order of sleeve and gauntlet--in your very experienced opinion, not a likely second-best? 

Carol

kira66715

Lizzy, I recently had the opportunity to talk to Jane Armer PhD, who has followed about 300 women for 84 months. She is now finding that new cases of LE are few and far between: she used to have the women come in twice a year for measurements, and is thinking about going to a survey.

One of the women here posted that Stanley Rockson of Stanford feels that most cases show up in the first 3 years.

But, there is a study that showed that with ALND although most cases showed up in the first 5 years, there was an additional 1%/year for the next 20 years.

And Andrea Cheville talks about how radiation fibrosis kicks in later, so that many cases show up after a delay at around the 3-5 year mark.

So, the incidence goes down, but the risk--although lower than in the first 5 years--persists.

My LE therapist has seen a lot of women get it at the 20 year mark.

And as Tina has said, if you're the 1% it's 100% for you.

Kira--I love your avatar also.

Outfield

For those of you hesitating on nightgarments:

Mine is a wacky looking thing (my impression is they all are) but it is very, very comfortable. Way more comfortable than a sleeve.  I encourage you not to see them as a last-resort.  Maybe if you are "intimate" often in the middle of the night it would be a drag, but other than that it's a really easy thing to try.

karen1956

I live in Denver and fly to FL and to ON to see my folks and my children....plus I've flown to Israel 3 x's since Dx...so far so good....early on I wore an "over the counter" sleever that an LE therapist gave me.....she said that since I did not have LE, she could not Rx a made to order one....I've been bad and have not worn it the past couple years...I know I'm playing with fire....MY BS only removed the first layer of axillary nodes on BC side and none on prophy side.....I know that LE can show up any time, but I've been a gambling lady...probably not wise but its part of allowing me to have some normalcy post Dx.

Binney4

Thanks, Outfield. And if you are "intimate" often in the middle of the night, you can order them with a zipper that makes it quicker to get out of.

Binney

hugz4u

Checking in after a couple bad exercise days.  Missed a couple days lebed opening but started again last night and will slap myself to wake up and go do it tonight even though it is almost 11pm.

I just can't keep up with you girls! Please devulge your secrets on how to get all that exercise in such a timely manner. Your intensity levels make me think you are all 25 and under! I feel like I am the turtle and you are the hare.

hugz4u

Sorry girls. My post should have gone under the exercise thread. If you haven't checked out that thread it is very inspiring and boy do those girls move! (Sorry I don't know how to move my last post to the appropiate thread)

jancie

Hugz - send a PM to the moderators - they might be able to help you.  Or you can delete your comment - cut and paste it first so that you don't have to retype it in the appropriate forum.  This stuff happens - no biggie!

Marple

Hugz~no worries.  You've just reminded us all to do our Lebed tape. :P

jancie

I have been following this thread because I do live in "high altitude"  We are at 5,000 feet in the Valley and I ride my horse at 10,000 feet elevation.  However, my body has adjust over the years and I never did get altitude sickness as most people get when they move here or visit here.

Take someone from Texas at 500 feet above sea level and have them walk a steep hill at 10,000 feet and they will be huffing and puffing.

I guess what I am getting at - is that although this issue doesn't necessarily concern me as I have lived here long enough for my body to adjust - I can see where those people visiting this area could have a complication.  It is better to be safe than sorry.  Binney knows I feel this way as I have sent her a number of PM's in the past asking for advice.

I know LE is a lifetime issue - I am doing everything possible to prevent myself from getting LE and yes....I wear compression sleeve and glove to fly or to do any work that is repetitive, watch for infections, bug bites.....y'all have taught me so much and I have passed that information onto women that ask me why I wear a sleeve when I fly.  I have met BC women that don't have a clue about LE or that LE even exists.

If I didn't live here and I came here to visit - I would be wearing a sleeve.  I realize that you can be very proactive and still get LE but dangit - I am going to try my best not to.

Anonymous

Hi ladies,

I don't have LE, no sign of it...and have lived at 7500 feet all my life.  My surgeon removed 11 lymph nodes for my lumpectomy/biopsy end of Sept, I'm finishing with chemo this week (hopefully) and then on to 33 rads.  My RO says a boost at the end.

I'm also planning to fly cross-country to NYC in June. Another long flight scheduled in July or August. Any suggestions?  Should I wear the dreaded sleeve--I hate thinking about it--and am I more protected because I've lived at high altitude all my life?  I'm very, very active....weight-lifter, 4.5 hours yoga a week, hiking/walking miles...but I'm worried.

I'm so, so afraid of getting LE. 

carol57

The posts on bc.org are of course all anecdotal, but I find Claire and Jancie's comments very intriguing. I wonder if there have ever been any studies of LE incidence at high altitude vs. closer to sea level.  Claire's question about being more protected after living at high altitude all her life is certainly interesting.  Is the body simply used to less pressure and doesn't need it?  Are lymphatic vessels adaptive to low ambient pressure, so they become larger or more extensive to compensate--and thus are in better shape to handle a disruption?  The imagination runs wild here.

Carol 

theBCavenger

I had an AND removing 32 nodes. I am still trying to find a place to get fitted for the sleeve... although I have had very little swelling in my arm, my side and underarm are always swollen and sore.

I am driving to the mountains this next weekend. I didn't even think about the high altitude being an issue... what should I do? should I wrap arm with ace bandage? If so, how tight do I make it? 

kira66715

DM--please, no ACE bandages, when people bandage for LE, they use a short stretch bandage, it has much less elasticity than an ACE which can cut into the tissue.

Here's what I'd suggest:

1) Get an appointment with a qualified LE therapist to address your arm/trunk/axilla swelling:

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm 

Here's information on truncal LE

2) Compression garments: you'll want a sleeve and a glove or gauntlet. Some pharmacies do dispense them, and you can also call DME/surgical suppy companies, and perhaps your treating physicians will know where to get them, and a LE therapist would know

Until then, many women use an underarmour shirt, turned inside out, to compress the trunk and arm.

Poorly fitting compression can trap fluid, and you never ever want to wrap with an ACE and LE wrapping needs to be taught.

It's a steep learning curve, but you'll get there.

Kira 

http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm 

hugz4u

Carol,Interesting that you are thinking about studies on LE and high althtude vs closer to sea level. 

I do wonder if maybe the lymph system does get use to it if you live high up. 

When I went to Yellowstones high elevation. I wondered how I would do as I live a comfy 500 ft above sea level which is really easy on my lymphatics.  Maybe that is why I felt so taxed when we would drive up and down those high valleys in the park.(I did my lebeds daily, yeah!)

I was so worried about elevation that the first thing I did when we thought we might go was to google the elevation in the park, I couldn't resist going. I heard it was so spectacular. It was.

As I said in my post earlier, I think it did make my LE spiral.  Of course guessing is just as reliable as finding a needle in a haystack. Who will ever know?  More studies needed . pretty please!

Kicks

Changes in weather give me more 'problems' than elevation changes do. I have more 'problems during times of low pressure (snowy/T-storms/etc.) than during nice high pressure times (sunny). It also seems that temps make a difference - winter is worse than summer - but then we get lower pressure during winter for the most part and with our temps/wind chills, I don't get out as much or do as much.



We're all unique. For me, high compression garments make it a lot worse but though I deal with some significant issues, low level is much better.

garnet131

All this talk of elevation and pressure reminds me of a comment made last night when I mentioned flying next month.  Unfortunately, I didn't get a direct flight, and someone wondered if going through two ascents/decents will be worse on the LE than just one.  Is it the pressure when in the air or the take off/landing that are bad? 

The first flight will be very short and second isn't too long either, and I will definitely be wearing arm protection of some sort--haven't decided which one yet.

Garnet 

carol57

Garnet, I live in a small town and I must take connecting flights to just about everywhere I go.  And I travel on average, every two to three weeks.  I am not bothered at all by short flights; and by that I mean the 20 minute flight that gets me from my home airport to a hub.  I suppose one reaason might be that we don't get very high altitude in that short period.  Longer flights do bother me, though; anything beyond about two hours and I predict I'll have some tingly achey feeling, which I deal with using MLD on arrival.  I'm in a short-sleeved men's UA shirt and my compression sleeve/gauntlet for the flights.  Sometimes if I'm flying less than two hours, I'll use just a long sleeve UA shirt.  Heat's getting to me this week, so all flights will be in sleeve/gauntlet, including one that's five hours.  

Hope you don't have a swell flight....

Carol 

Charles_Pelkey

I haven't flown since my bilateral mastectomy. I do, however, live at 7250 feet in Laramie, Wyoming. I've had some problems, but I am still unwilling to attribute that solely to the altitude.

Things are certainly improving with exercise.