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Old 10-19-2004, 08:29 AM   #1
lolam
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I will be flying from WA to S. Mexico, about 11 hour day. Do you all wear those elastic sleeves when you fly? Where do you get them?
Thanks.
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Old 10-19-2004, 10:15 AM   #2
vicki
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I do a lot of flying and find I do get (mild) problems if I forget to wear my sleeve. My oncology nurse advised me where to get the sleeve (a medical supply company that sold all sorts of health aids from bandages, support stockings and incontinence apparatus to wheelchairs and household appliances)and I found them very knowledgable about what sort I would need to suit my purposes depending on the surgery I had had etc. If you have a lymphoedema clinic in your town they may have supplies for you to look at and be able to order what you need. You need to be measured up and sometimes the sleeve may need to be specially made for you, so allow time.
Regards,
Vicki
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Old 10-19-2004, 10:20 AM   #3
Sandy H.
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I wear a sleeve and glove when I fly. I wear a jobst sleeve daily and take it off at night. My insurance pays for mine if I have a prescription from the doctor. Have a great trip. Hugs, Sandy
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Old 10-19-2004, 12:00 PM   #4
Rozebud
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I wear one as well. Ask your oncologist to recommend/refer you to a lymphatic therapist who can fit you with a glove. Hopefully it will be covered by insurance.
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Old 10-19-2004, 09:06 PM   #5
Sheila
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I also wear a sleeve when flying, it is comfortable ( I was fitted for it) and I have never had a problem. BCBS paid for all of mine!
Hugs
Sheila
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Old 10-20-2004, 04:08 AM   #6
Leslie
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Hi Lola,

I believe you live in Spokane as I do. I use Jobst sleeves. I get them at Choice Medical Supply -1214 East Sprague. They just recently changed their name and I can't think what it is, but they are still in the same location. You will need a prescription from your oncologist. Then see Joni at Choice. She will measure you for the proper fit. I do think it would be a good idea to have one. My insurance paid for the majority of mine. I hope you have a great trip.
Leslie
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Old 10-20-2004, 11:39 AM   #7
Steph N
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Hi -
I have not been wearing one and have had 2 transcontinental flights this year. But this Friday I WILL be wearing a Jobst sleeve as it is a longer flight.
Probably should have before, but no Lymphedema so far.
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Old 10-21-2004, 09:56 AM   #8
lolam
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Thanks so much gals - continuing to look into it. Evidently it takes a couple weeks to get the sleeve after fitting so I may run out of time. I guess some surgeons think they are not necessary, some do. Have a call into mine but no response yet, busy I guess. I leave in one and half weeks - I didn't realize it was a process. I have a tad swelling in wrist. I would hate to get lymphadema as I guess you always have it once you get it... Hugs, Lol
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Old 10-21-2004, 11:11 AM   #9
Sandy H.
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The surgeon knows nothing about lymphedema and will tell you you do not need a sleeve. A specialist in lymphedema is the one that will tell you what you need. Anyone with nodes resection and/or radiation needs a sleeve on the effected arm. Prevention is the best way to go and no one knows who will or will not get lymphedema. If you can not get a custom sleeve you should be able to get a off the shelf such as Jobst and if the specialist feels it maybe a problem she may recomment wearing 2 one over the other. That is what mine told me it is cheaper to wear 2 then to have a custom one made which takes several weeks. I hope this helps and by all means enjoy the trip. Hugs, Sandy
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Old 10-22-2004, 04:04 AM   #10
Leslie
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Hi Lola,
I agree with Sandy. Get a stock size sleeve. Choice Medical Supply will have them. In fact I like my Jobst stock sleeves better than my custom one. Get your prescription from you oncologist. That may be easier than the surgeon. You shouldn't have any trouble getting everything done in time. I do think it is important. I know first hand that lymphedema isn't fun!
Leslie
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Old 10-27-2004, 02:08 PM   #11
JoAnn Altemus
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Forgive me for butting in--I'm new to the site.I do have lymphedema, which began very slightly after a fairly short flight without a sleeve (the need had been mentioned in passing, but no one told me how to get one, where, etc). I was still on chemo at that time; the real edema began during radiation, and worsened. It took a LONG time to find that there was actually a treatment for this problem, and then to find a local place to get that treatment. Had treatment, still have some lymphedema, wear a sleeve pretty much all the time now. If you don't have symptoms (a prickly feeling in the arm, maybe some heaviness in the torso, visible arm swelling or pain), you can get a sleeve at Ameswalker.com, which has various brands at good prices (MUCH lower than ordering them through your local medical supply firm--). They give very good instructions for measuring, and you will want to have someone help you with that part. If you have a prescription, your insurance may pay for it, if you don't, you can buy the sleeve without it. You need "medium compression, 20-30 mm Hg". (I am a Physician Assistant, frequently order compression sleeves/stockings for patients as part of my job, so I do know what I'm talking about--). If you are going on a really long flight, especially if you've had a lot of nodes removed, you might consider putting a sleeve on each arm, as I've been told some poor souls do get it in the opposite arm also. I do think it's very important to wear one on the same side as your surgery even for a short flight. Hope this helps--if you need more info, let me know.
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Old 03-16-2006, 05:57 AM   #12
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help

My Mom Has Lymphadema In Both Legs, It's To The Point Wherebshe Can't Ntouch Her Legs At All. I Need To Find A Specialist In Spokane To Help Her. Worried
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Old 03-16-2006, 05:57 AM   #13
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help

My Mom Has Lymphadema In Both Legs, It's To The Point Where
She Can't Touch
Her Legs At All. I Need To Find A Specialist In Spokane To Help Her. Worried
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Old 03-16-2006, 11:17 AM   #14
Maggie
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Cool

Hi,

Please excuise my ignorance... I don't have Lymphadema but will be flying next month for 5 hours. Do I need to wear a sleeve??? I had 7 nodes removed with my Lumpectomy, all negative July 2004.

Maggie, .......... who's starting to panic!
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Old 03-16-2006, 11:28 AM   #15
Susan2
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Yes, the sleeve would be used as a preventative measure on a flight if you had nodes removed. I am taking a long flight in a couple of weeks and will wear one. I find them uncomfortable, but necessary. I do better if I remember to remain hydrated on the long flights. I drink lots of water, no alcohol and no caffeine and I try to move around as much as possible.Good luck and have fun.
Susan
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Old 03-16-2006, 12:30 PM   #16
Sheila
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Maggie
I wear one anytime I fly, short or long distance...it seems like a little overboard, but I have never had any problems...so I keep wearing it...the hardest part is to remember to take it to the airport....I had mine specially ordered by measurements to specifically fit my arm.
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Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
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Old 03-16-2006, 12:32 PM   #17
StephN
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Try Physical therapy clinics

Dear Guest in Spokane -

If your Mom's oncology clinic will not give her a referral, than call around to some good phycal therapy clinics. There is usually someone in each location who can work with the lymphedema. There is a specialty clinic here in Seattle, but I went to a general physical therapy clinic that has a therapist well-trained in dealing with lymphedema.
Good luck!
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Old 03-16-2006, 01:10 PM   #18
Monique M
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Just another example of how this board educates us. I had no idea I should be wearing a sleeve while traveling. I have two long flights coming up (over 6 hours) and I will definitely be ordering a sleeve. Thank you for the great information.

Peace and Blessings to you all!
Monique
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Old 03-16-2006, 01:58 PM   #19
Rupali
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This is a great discussion. We plan to travel to India in September and that is two flights of 8 hours each, first from US to Europe and then after 4 hours break another one to New Delhi.

I am now starting to think that it might be better to stop for a day or two in Europe and let the arm relax and then take the flight from Europe.

The bad thing is that I inquired in New Delhi and they do not have a lymphedema clinic and the doctors said they try to sort out complications themselves.

I am scared what to do. As my family lives in Delhi so I am desperate to see them, havent seen them in 3 years...
Perhaps I should take a ship cruise, if there is one......

I talked to the physical therapist at Mass General Hospital last year and she said she does not advice a sleeve....that has even confused me more....
Who is the right person to talk to on the medical team for how to prevent lymphadema....
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Old 03-16-2006, 07:27 PM   #20
Tami
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When I fly I wear a Jobst sleeve (wrist to shoulder) and gauntlet (glove for the hand) that I got from the Sav-on Drugs Medical supply section that they have in their larger stores. Together I think they were about $100. I also have started using them when I go up in the mountains. I noticed some slight swelling after being at 8000 feet for a few days.

best
tami
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