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Topic: Lymphedema in a foreign country — long flight home

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Jan 8, 2018 10:02AM - edited Jan 8, 2018 10:05AM by McButterfly

McButterfly wrote:

Hello, I've just discovered this wonderful forum. My lymphedema appeared after 23 years. Unfortunately, it came soon after I'd arrived in Europe where I have a dog-sitting gig through January 21 and was planning to travel on until mid-March. I arrived in Italy on November 16 and by December 3 the lymphedema was obvious, although I wasn't sure what it was or what to do about it. Long story short: I've searched for help here in the small city of Empoli, and searched the area online, but so far I get no answer or am shuffled around without any real treatment. I was sent to a shop and am having a sleeve and gauntlet made, so that's something. It will be ready January 10. I did find a LD therapist, but when she found I had had a reoccurrence in 2015 she felt she couldn't treat me for fear of "spreading the cancer." Even the osteopath who was giving my some relief from the shoulder and back tightness decided, after speaking to the LD therapist, to not treat me any more for the same reason. I've tried to reach my oncologist or his secretary back home in Canada via email, but so far, no calls back or emails from them. I haven't called as both the oncologist and nurse are too busy to take calls.

I've been doing a LD self-massage for about 2 weeks and Binney has just posted another video that looks and feels even better that I have started. I have not learned how to wrap, mostly because every video I've seen is different and it looks far too complicated and how do I do that with my undominant hand? I'm sure you know what I mean and I'm full of admiration for those of you who have learned this and do it regularly.

I guess my question is this: with regular self-massage, eventual regular wrapping and my sleeve and gauntlet, will I be able to fly home eventually and what will determine if I can or not? Do arms explode on airplanes? (My biggest fear). The flight from Rome to Victoria, BC is long — a 3-hour and a 10-hour leg with a lay-over inbetween. I will be changing my flight and am considering a train to Amsterdam, staying there for a few days, with possible treatment, and then the longer leg to Victoria.

Thank you for any thoughts or guidance and lots of love and respect to all of you here.

Angela

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Jan 8, 2018 11:41AM - edited Jan 8, 2018 12:13PM by hugz4u

Butterfly. This is your day! Your so smart to reach out here because if you pm me I'll give you a name of a therapist with 20 years experience AND she lives in Victoria. If you email her and tell her you want to see her when you get back I bet she will give you tips on what to do now in Europe.I saw her once and was impresssed! She may even know some Vodder trained lymphedema therapists where you are staying near by. She is quite involved in the LE community. AND she is a caring person.

No your arms won't blow off in a plane but they could swell and get achy. Drinks tons of water on flight. Move around often. I stood at the back of plane a lot and stretched body and arm. Raise affected arm straight up like your eager to give an answer and pump fists slowly 25 times often on plane and ground for that matter. But don't tire out arm.Take deep belly diaphramic breaths to move your lymph ststem there to help clear nodes.

Start wearing your sleeve and glove for a couple hours a day to get use to it before flight. Let us know how it feels.

Wear before you leave the sleeve shop.if fingers are going purple it's to tight. Wear for a hour or less near the shop you got it from and if you can't stand it go right back into the shop and tell them your troubles. It should be comfy not so constricting that you want to tear it off. Tell shop you want to buy a donner and special rubber glove to put the sleeve on with. Also have them sell you glue incase sleeve slips down. You will want all this to make life and travel easier. You may need to buy thin silicon scar tape for your inner elbow if it becomes irritated. You put it on elbow crease and leave it there when wearing sleeve. Get the kind you can use over and over. One lasts me two weeks. You could use anti friction stick that marathon runners use to prevent chafing also in inner elbow. Get at running store.

Make exercise your best friend by starting with gentle walking if your not use to it.This is great for lymph movement but if you find your swelling when walking then hold your arms like a jogger does. Sometimes dangling arms collects lymph fluid in hand. Again raise arm and pump 25 times even during walks. I do this about three times for half hour walk.

Btw. I'm your west coast neighbour

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Jan 8, 2018 07:45PM Denise-G wrote:

hugz4u - what great advice for McButterfly!

www.denise4health.wordpress.com my BC Blog with over 200 informative posts about all aspects of BC - stop by! Myself, my mom, and sister were all diagnosed with BC within 3 years. What a ride! Dx 10/10/2011, IDC, Left, 6cm+, Stage IIIA, Grade 2, 9/14 nodes, ER+/PR+, HER2+ (FISH) Surgery 11/23/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 12/27/2011 AC + T (Taxol) Targeted Therapy 2/28/2012 Herceptin (trastuzumab) Hormonal Therapy 10/11/2012 Arimidex (anastrozole)
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Jan 9, 2018 01:08AM hugz4u wrote:

Denise. Thx for dropping in. The more the merrier for tackling the lymphedema beast!

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Jan 9, 2018 07:59AM Amelia01 wrote:

Angela, do you think that not wearing a compression sleeve on the plane may have been a factor? I'm taking an international flight next month and heard it is best to wear just as a precaution.

I'm in Italy (Milan) if you need any help from this end. Just holler if I can be of any help.

Sorry to read this has put such a damper on your trip :(

Dx 10/17/2017, ILC/IDC, Left, 6cm+, 17/21 nodes, ER+/PR+, HER2- Surgery 11/6/2017 Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel)
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Jan 9, 2018 08:40AM McButterfly wrote:

hello, Amelia! Ciao! I've thought back and realize now there were plenty of signs but it didn't cross my mind that it was lymphedema after 22 years, until the swelling became obvious once I'd flown across the Atlantic. So, the answer is yes, definitely. I'd wear the sleeve, and gauntlet, if necessary. I don't know if you've read the rest of the replies here, but it sounds like self massage and different types of movement can also help during a flight.

My oncologist in Victoria sent me a message today that there's "no proof that flying is dangerous to a lymphedema sufferer." Once I thought about it I could see that swelling ankles, etc is more edema and not congestion of lymph.

Personally, if I am able, I will have a drainage treatment and don the compression sleeve just before the flight. If you don't have one and are going to a shop to get a sleeve, read the page on that here in the Lymphedema thread. They can be expensive and there are important things to being fitted

It's been like spring here near Vinci the past few days and if I could find a therapist here that knows they would not be spreading my cancer, I'd love to stay around here for another month or so before going home. I wonder if you have a therapist in Milan, if they could recommend someone in Empoli, ideally or Florence would be okay, too. I don't have a car so dependent on trains and buses. I may start a thread asking anyone in Italy 🇮🇹 f they could help me with that. I did find a guy in Florence through an Austrian clinic website. I emailed him but no answer.

All the best to you. Let me know if I can support you in any way.

Angela

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Jan 9, 2018 11:51AM Binney4 wrote:

Angela, the reason there's no proof that flying can trigger (or worsen) lymphedema is because it would be unethical to set up a study subjecting women to a potentially damaging condition in order to compare those who take measures to protect themselves and those who don't. So there never will be proof of that. Unfortunately some professionals have taken that to mean there's no danger of it happening, and they have attempted to debunk the idea despite the overwhelming anecdotal evidence that it can, indeed, trigger lymphedema. While it's true that swelling in legs and ankles is not lymphedema, it's the lymph system that has to remove that fluid from the limbs. Since the lymph system in your affected area is already compromised from breast cancer treatment, any "normal" swelling presents a risk of overwhelming it. As someone whose arm and hand lymphedema started on a flight to Alaska, I'm not a believer in debunking risk reduction strategies.

That said, the fit of any compression garments is crucial, as a bad fit can actually make it worse. And as Hugz points out, there 's a lot more you can do to keep your lymph system happy when traveling.

1. Stay really well hydrated (I tell the flight attendant I have a medical condition that necessitates staying well hydrated and in my experience they've been happy to help supply me with water).

2. Move your arms frequently (see Hugz's suggestions).

3. At intervals, do some deliberate deep breathing, as that stimulates the biggest lymph vessel in our bodies.

4. Be careful about hefting your luggage around. This applies at the airport and on the plane, of course, but remember to guard your arm when you're packing at home too. Use smart body mechanics when lifting anything, and ask for help when there are others around (I've never had trouble finding someone to help lift heavy bags on and off the carousels or into the overhead bins). Don't sling a heavy bag or purse over that shoulder, either, as that compresses the lymph vessels (which are near the surface of the skin). Obviously wheeled luggage is preferable, but it's still heavy when you lift it.

5. You might want to protect your chest and back with some compression too, since they're subject to lymphedema risk as well. A sports shirt in a size smaller than you'd normally wear (and turned inside out if the seams bother you) is a good choice, and several women here prefer men's shirts because the sleeve seams are less restrictive.

If you do experience swelling on the plane despite your precautions, don't panic--you'll get things back in control once you're back on the ground.

For what it's worth, both Austria and Germany have long had a reputation as leaders in lymphedema treatment, since our standard Manual Lymph Drainage and wrapping started there. The US and Canada were slow to catch on, but fortunately we're better off now than even ten years ago. So if this therapist you emailed was well-trained in Austria, you may very well find yourself in good hands--try emailing again, or give him a call.

What I'm really hoping is that you'll be able to relax a bit now with the new information you have, and actually enjoy the rest of your trip without the anxiety that lymphedema can certainly cause.

It'll be good!
Binney



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Jan 14, 2018 11:36AM McButterfly wrote:

Thanks, Binney. I have every intention of doing all I can in the way of self-care during my return flight. I'm already afraid of the risks, so I'll use the whole arsenal of self-care during the flight. It's even occurred to me, if I don't have to pay a charge to change the flight date, to look into first class. I've never flown first class, and since I'm ending my trip over a month early, maybe this is a good time to spring for it. When I hear what it costs, I'll probably change my mind, but the extra space and dotting by the flight attendants would make it a little easier to take. :)


Take care,

Angela



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Jan 15, 2018 09:03AM Manuella wrote:

Angela, maybe finding someone who will wrap you for the flight or even use kinesio tape to help drain your arm might be options. Fingers crossed all goes well

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Jan 15, 2018 09:41AM McButterfly wrote:

Yes, Manuella, I'm flying out of Rome so finding someone there could be another needle-in-a-haystack scenario but perhaps I'll learn enough to do it myself before I go. Otherwise, I'll have my compression sleeve which is finally ready and I'll pick it up tomorrow. It sounds, from what I've read, that not that many people really know how to use kineseo tape and the right kind for us. I'm a little skeptical about that until I really know the person's reputation, I guess. Thank you, dear. I hope you are doing well.


Angela

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