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Topic: Flying to India need advice

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

Posted on: May 16, 2017 10:45PM - edited May 16, 2017 10:49PM by netrajkr

netrajkr wrote:

Hello friends, Finally Im going to India to see my family.It's my first flight after surgery .I had a total masectomy with SNB 3 nodes removed on June 24th 2015.No radiation and no chemo.I had been quite nervous to fly since then because of the little risk of Lymphedema I have.I had finally mustered courage and strength both physically and mentally.I have been reading all about the precautions.I need advise how my flight should go? My first flight is 10 and 1/2 hours from LA TO LONDON.I have a lay over of 5 and 1/2 hours in LondonThen my next flight is 8 and 1/2 hours from London to New Delhi.My first flight is overnight.This is how Im planning .Please advise what I can add here or remove.:

1Wearing sleeves 2 hours before first flight till I reach New Delhi and then 4-5 hours after I land New Delhi.

2 Deep breathing,Drinking water after every 2 hours, moving around in the plane, stretching and exercising ,making fists while on seat.

3.Avoid salty food and carrying heavy luggage.

4 Finish my packing 2-3 days before and eat and sleep properly during those days.

Now my concerns are ;

I will be wearing sleeves for more than 24 hours .would it be possible that it would get uncomfortable to a point that I might want to take it off?I have been practising on wearing both sleeves and gauntlet and maximum I wore was for 5 hours till now . i didn't have any issue with that.Is I cant avoid sleeping in that long journey so do I have to keep my arm in a certain position while on seat or sleeping?is it okay to take off gauntlet to wash hands?

sorry for the long post .Thank you for all your help .This is the only place where I can actually say what I feel.Thanks again.

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May 16, 2017 11:23PM ksusan wrote:

You should check with whoever prescribed your sleeves. I don't have LE but wear sleeves and gauntlets for prevention on planes. The LANA-certified nurse who works with me on LE prevention said I could change sleeves to a fresh set during a long flight. I take the gauntlets off if I'm eating something sloppy and when I use the rest room on a plane.

Mutant uprising quashed. Dx 1/2015, IDC, Right, Stage IIA, 1/1 nodes, ER+/PR+, HER2- Dx 1/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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May 17, 2017 12:53AM tessu wrote:

I already have LE on my operated side, so I already wear a glove/gauntlet and sleeve all day. Was scared about a recent vacation with 9-hr flights making the LE worse. But I did as you plan: extra deep breathing, avoid salt, lots of fluids, and keeping the compression gear on for hours after my flights. I got a window seat with the window on my LE side --- makes it easier to elevate your arm/hand for awhile every hour. Also rolled up my sweater and the plane's blanket as a cushion to keep my arm/hand from dangling straight down while I dozed.Was pleasantly surprised that I had no worsening of LE.

Agree with ksusan: Do bring a clean sleeve at least to change mid-trip, if the plane is warm and you get sweaty, your skin might get irritated with the sleeve on for such a long time. Bring those hand sanitary wipes to disinfect your hands after using the toilette --- but make sure your hand is dry before putting the gauntlet/glove back on again.

Hoping you have a great trip!

Be gentle with yourself. Dx 7/29/2015, IDC, Right, Grade 3, 0/9 nodes, ER+/PR-, HER2+ Surgery 8/19/2015 Mastectomy: Right Chemotherapy 9/9/2015 Taxotere (docetaxel) Targeted Therapy 9/9/2015 Herceptin (trastuzumab) Chemotherapy 11/11/2015 CEF Hormonal Therapy 1/25/2016 Arimidex (anastrozole) Hormonal Therapy 12/20/2016 Femara (letrozole)
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May 17, 2017 04:57AM - edited May 17, 2017 05:03AM by ChiSandy

I would don the sleeve and gauntlet one hour before boarding the first leg of the flight at LAX (not always predictable when the flight will actually take off, so use boarding time as your touchstone). Good call on staying hydrated, watching salt (might want to pre-order a low-sodium meal because the airline catering default is extra salt in order for tastebuds blunted by flying at cruising altitude to be able to taste anything) and moving as much as possible on the flight. Fist pumps, hand circling, etc. (Might want to warn the flight attendants ahead of time that no, you're not signaling them). During that 5-1/2 hr. layover at Heathrow, remove it an hour after landing and then re-don it an hour before boarding the flight to New Delhi. Might seem easier to keep it on the whole time, but trust me—you want to give your arm & hand some comfortable recovery time before the next flight; keeping it on for nearly 24 hrs. is not a good idea (that's why we don't wear it to bed—and if we need compression for sleep, it's an entirely different type of garment). Keep it on after landing in New Delhi. Have someone else carry your bags, or at least don't use that arm to do so, regardless of whether your sleeve & gauntlet are still on. By the time you deplane, go through passport control, baggage claim & customs, an hour very likely will have passed so you can remove it in the taxi. At the very latest, take it off when you get to wherever you'll be staying.

Definitely take it off for hand washing, and put it back on after drying. As to a window seat on the LE side, make sure you pull down the shade when the sun is shining—you don't want your arm to get hot!

Don't put it on until an hour before each flight—2 hrs. ahead is way too long for comfort unless you actually have LE and need to wear it all your waking hours. And DO remove it after a hour has elapsed after each landing—and keep it off until an hour before boarding the next flight (the exception being a layover of less than 2-1/2 hrs). 4-5 hrs. after your final landing is just too long to wait before removing it. Follow these suggestions and there will be no need to change sleeves midstream for comfort. But you might want to put on a different set for the second leg, because after a very long flight there's some stretching & loss of compression until you get a chance to wash & dry it again. I've twice flown nonstop between Chicago & Rome, and it's about 10 hrs. Didn't need to change sleeves during the flight. (I’ve done Chicago-Tokyo, which is even longer, but that was way before breast cancer).

As to drinking water, every 2 hrs. isn't often enough, especially if you'll have alcohol or caffeine too. Shoot for at least a glass per hour—you will be thirsty and find it easier to drink in flight than on the ground. I know it's a PITA to have to get up and pee often, but that's the price we have to pay for health.

Good call on getting packed way ahead of time. Long trips are stressful enough as it is without the worry of doing everything at the last minute. The more rested you are, the easier the trip will be.

One of my most frequent recurring nightmares is that I am racing the clock to get everything packed before I have to leave for the airport and I might not get there in time to make the flight—and often it's on a group tour which might leave without me. Sometimes it's about the same thing happening on the day I have to return home—having to race the clock to get packed before checkout time. (A shrink would have a field day about those dreams—fear of time running out before I die? Not really—been having this dream since long before breast cancer. Probably more like fear of missing out or being unprepared—a variant of the old “naked in public" or “discovering you have a final for a class you forgot you'd registered for" nightmare).

Bon voyage! Someday I'll get to India.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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May 17, 2017 05:16AM ksusan wrote:

Bonus of frequent peeing on planes: It makes you get up and move more frequently, reducing the risk of deep vein thrombosis.

Mutant uprising quashed. Dx 1/2015, IDC, Right, Stage IIA, 1/1 nodes, ER+/PR+, HER2- Dx 1/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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May 17, 2017 08:27AM EastcoastTS wrote:

Perhaps a silly question but I'm reading this with interest as I travel and sometimes longgg flights.

If we've (we as in the BC crew here!) have had SNB but no indication of lymphedema, do we have to wear a compression sleeve? Doctors are no help with this question. Differing opinions or they just brush it aside. ;)

Dx@ 49. Oncotype: 14, BRCA 1/2- Dx 1/4/2017, ILC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/27/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 9/7/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 17, 2017 09:39AM ksusan wrote:

The answer from people who know about LE seems to be either "yes" or "yes on flights over 4.5 hours."

Mutant uprising quashed. Dx 1/2015, IDC, Right, Stage IIA, 1/1 nodes, ER+/PR+, HER2- Dx 1/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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May 17, 2017 10:17AM netrajkr wrote:

thanks all for suggestions,I'll write more later since I have to leave for work .one quick question do I really need to have another extra sleeves ? I'm not sure I have enough time and since I don't have the disease the Insurance doesn't cover it.I just emailed the Lana therapist here to know what she thinks ?

Love to you all

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May 18, 2017 11:46AM Binney4 wrote:

Good morning, netrajlr,

Brava for your courage in making plans to get on with your life! The advise here is all good, but just want to add that the issue with wearing garments when flying as a way of reducing your lymphedema risk depends on the garments being well-fitted and a low compression level (15-20 or 20-30 mm/Hg). A poorly fitting garment can cause problems instead of preventing them. Here's information on proper fitting for lymphedema garments:

http://www.stepup-speakout.org/proper_fitting_of_l...

Ira Dave has recently started a lymphedema organization in India, the India Lymphedema Foundation, and she might have some thoughts on this as well. Also, should you need care while there, she would be able to steer you to help. Contact her at her Facebook page here:

https://www.facebook.com/indialymphedemafoundation...

I'm looking forward with you to this wonderful opportunity to travel. Please keep us posted, and tell us how we can help.

Hugs,
Binney

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May 18, 2017 01:15PM - edited May 18, 2017 01:15PM by ElaineTherese

There is actually some controversy as to whether or not women AT RISK of lymphadema should wear compression garments. (If you already have lymphadema, there is no controversy -- you should.) See:

http://www.stepup-speakout.org/Controversial%20Studies%20on%20Compression%20Garments%20when%20Flying.htm

Though I had 20 lymph nodes removed, I personally don't wear compression garments while flying. However, most of my flights are 3 - 4 hours at most. If my flight were 10 hours or longer, I certainly would consider it. Have an awesome trip!

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/23/2014 AC Targeted Therapy 9/17/2014 Perjeta (pertuzumab) Targeted Therapy 9/17/2014 Herceptin (trastuzumab) Chemotherapy 9/17/2014 Taxol (paclitaxel) Surgery 1/12/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/25/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/9/2015 Breast, Lymph nodes
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May 18, 2017 05:15PM SSInUK wrote:

I fly long haul (10hrs) maybe every other month. I have truncal/breast lymphodema and have never found it to be affected by the flight, despite only light compression garments. Activity, carrying weight etc - much more noticeable effect on the swellin. Drinking water and moving round always sensible on a long flight.

Dx 11/2014, IDC, Left, 5cm, Stage IIIA, Grade 2, 5/17 nodes, ER+/PR+, HER2+ Dx 3/30/2016, Left, Stage IIIC Surgery Reconstruction (left): DIEP flap Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Targeted Therapy Herceptin (trastuzumab) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lymph node removal: Underarm/Axillary Surgery Lymph node removal: Underarm/Axillary; Mastectomy: Left Chemotherapy AC + T (Taxol)
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May 18, 2017 05:22PM muska wrote:

It is my understanding that the OP does not have lymphedema and have no particular reasons to worry. I would simply follow normal flight recommendations like mentioned above by many: move around, etc. I fly frequently, including transatlantic flights and never wear compression garments.
Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Dx 6/13/2013, LCIS, Both breasts Surgery 6/13/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/25/2013 AC + T (Taxol) Surgery 2/20/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/12/2014 Arimidex (anastrozole) Radiation Therapy 3/23/2014 Breast, Lymph nodes, Bone
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May 18, 2017 07:44PM netrajkr wrote:

Thank you all for your suggestions.Initially as suggested by my surgeon I decided not to wear sleeve but just keep it with me when I fly .But as I read more about it I realize that it is such a controversial issue and nobody has one straight answer The LANA therapist here told I don't have to wear it but there is no harm in wearing it bcoz she saw me putting on it with gauntlet and they fit well.

Since last 6 months I have been gathering courage to fly and see my family. For few months the fear took out the best of me and I wasn't ready to go for the trip which used to be the most exciting one.

I decided to wear sleeve now because I'm in the plane for about 20 hrs ,had it been a short 2-4 hours I wouldn't have worried about it. My sleeve fits well and I got it from a professional fitter.Now, my understanding is that firstly your sleeves should fit well and you should be moving and hydrating a lot, with all the precautions of salty food and heavy luggage.

so as Chisandy suggested I will put on and take off before 1 hour of boarding and 1 hour after landing.

Thank you Binney for sharing the information of Lymphedema foundation in India.

Love to you all .I'll keep you posted .

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May 18, 2017 10:01PM Binney4 wrote:

netrajkr, you've got it all there--now relax and enjoy looking forward to a WONDERFUL trip.

Hugs,
Binney

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May 19, 2017 12:49AM netrajkr wrote:

Thank you so much Binney.

Much love ❤️ to you

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May 19, 2017 01:39AM ChiSandy wrote:

At my pre-op “teaching session," my BS' NP measured me for a compression sleeve and gauntlet, and instructed me to get fitted for a Level 1 set; she said to buy it well in advance of any 4+ hr. flight so that I could confirm proper fit and practice donning & removing it. I ended up having 4 nodes removed—2 sentinel, 2 attached non-sentinel. A week before my trip I experienced forearm cording, so I knew my risk had increased. On the flight home, I noticed slight finger-swelling (the gauntlet was too short—I have short fingers but long palms). When I got back and saw an LE specialist (a LANA founder), he said “I don't recommend wearing compression in flight for patients who've had only 4 nodes out;" but when I told him about the cording beforehand and the finger-swelling, he prescribed a Mediven “Harmony" compression glove (which does work but is very stiff and uncomfortable), diagnosed me as “subclinical" Stage 0 LE and referred me for 12 PT sessions. After the second session I did get a brief flare that the substitute PT declared was Stage 1, and I had to wear compression for guitar playing and other repetitive forceful arm motions, but it's since resolved and the LE doc says it's back to Stage 0 or even in remission. I found that LympheDivas' gauntlets fit perfectly (the fingers on their gloves are too long) and come in fun colors & patterns to match the sleeves. Because I rotate among several sets, and wear them only for exercise (only an hour) and long flights, I can go a bit longer before washing & drying them and have yet to need to replace any of them. (Those who wear them daily during waking hours must wash & dry them after each wearing, and need to replace them after 6 months due to loss of compression power).

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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May 19, 2017 02:56AM hugz4u wrote:

Make water your best friend on flight. I'm so glad your dream is coming true and your flying. Me chicken still to fly.

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May 31, 2017 12:47PM - edited May 31, 2017 12:51PM by netrajkr

I'm so happy sharing with you all that I reached India yesterday .Though the flights were very exhausting being very long and getting up and movingaround as much as I could .I wore the sleeve and gauntlet on both flights and drank water a lot.All of this was quite overwhelming,but all worth it seeing my family and friends after 2 yrs.Thank you so much for all your suggestions and advice .


Love to you all

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May 31, 2017 04:34PM ksusan wrote:

Glad it worked out! Now make sure you don't get too much sun on your arms!

Mutant uprising quashed. Dx 1/2015, IDC, Right, Stage IIA, 1/1 nodes, ER+/PR+, HER2- Dx 1/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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May 31, 2017 06:07PM Binney4 wrote:

So happy for you, netrajkr, and thank you for taking time out to let us know. Enjoy your stay!

Hugs,
Binney

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Jul 21, 2017 05:57PM netrajkr wrote:

I'm back from my India . All went well during the flights ,followed the same precautions in all the flights ..Thank you all for the support and suggestions

Love and peace to you all

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Jul 21, 2017 06:27PM ksusan wrote:

Glad to hear it!


Mutant uprising quashed. Dx 1/2015, IDC, Right, Stage IIA, 1/1 nodes, ER+/PR+, HER2- Dx 1/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 21, 2017 06:37PM Binney4 wrote:

Thanks for letting us know. Hoping the memories you made on this trip will continue to comfort and delight you for a long time to come!
Binney

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Jul 21, 2017 07:13PM iz1999 wrote:

hello ladies, I have a question, my insurance won't cover my sleeve because I don't have lymphedema, the lymphedema therapist suggested for me to buy one to use when my arm feels too tired, or if I fly, any suggestion where to buy one that is not so expensive

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Jul 23, 2017 04:32PM netrajkr wrote:

Hi, iz1999 due to the same reason I bought my sleeve and gauntlet from my professional fitter.She measured my arm for size and once I got that I tried in front of her to check it fits well.I'm not sure if you could get online that might not be expensive.But,you should make sure that it fits you properly.

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Jul 23, 2017 04:58PM netrajkr wrote:

Thank you Binney,I'm so glad that I made this trip to see my all my loved ones, it has brought so much peace and calm in my mind.

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Jul 25, 2017 06:00PM - edited Jul 25, 2017 06:02PM by Jennie93

Several people here have purchased from this place:

https://lymphedivas.com/

They seem quite reasonable, and fun colors & patterns too. There is detailed info about measuring, and you can return anything that doesn't fit.

Good info on fitting here:

http://www.stepup-speakout.org/proper_fitting_of_l...





49 at dx. Found on routine mammogram. Complications: cording, truncal LE. Dx 8/2012, IDC, Left, 2cm, Stage IIB, Grade 2, 4/6 nodes, ER+/PR+, HER2- Surgery 9/5/2012 Lymph node removal; Mastectomy: Left Chemotherapy 10/16/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 3/24/2013 Lymph nodes, Chest wall Hormonal Therapy 5/23/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 2/1/2015 Arimidex (anastrozole)

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