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All TopicsForum: Lymphedema → Topic: Weird Arm Size?

Topic: Weird Arm Size?

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

Posted on: Mar 8, 2017 05:58AM

nye1980 wrote:

I am starting to make myself a little crazy. I had 28 nodes removed back in June of last year and have been fine so far. I will be flying to the States from Thailand in a few weeks and have been trying to find a compression sleeve. There are no lymphedema specialists here and every sleeve distributor I have found don't have sleeves in my size. I thought I'd scored with a company that imported sleeves from Germany, but I can't even get it on and it hurt so bad that it just can't be right. I tried to order on LympheDIVAs, but even their app said I had to contact them because they didn't have the proper sizing. (I have a larger upper arm in proportion to my elbow, wrist, and palm.) I don't know what to do. When I'm in the States I can see someone, but I have no resources and no options here. I have no one to teach me to properly wrap. I am feeling so scared. I'm going to end up having to go without and make sure to do MLD and move as much as I can and stay hydrated and hope for the best. Anyone have any other ideas?

Dx 6/1/2016, DCIS/IDC, Right, 2cm, Stage IIIA, Grade 1, 4/28 nodes, ER+/PR-, HER2- Surgery 6/15/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Chemotherapy 7/19/2016 TAC Hormonal Therapy 10/15/2016 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 12/5/2016 Whole-breast: Lymph nodes, Chest wall
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Mar 8, 2017 12:11PM Kicks wrote:

Not sure but do you have a DX of LE? If so whoever you got the DX from should be able to help you.

There are quite a few who do not correctly fit the sizes of garments that are OTS (Off The Shelf) for various reasons. For those of us who do not fall into the OTS 'norm' we have to do Custom garments. I fall into that area. Custom garments are more pricey but sometimes there are no other options.

For me, I have to have low level compression (higher quickly worsens my LE) and though I'm basically 'average' (5'6", 130 lbs) but I have very long arms (and legs) and they do not make OTS sleeves that are long enough for my measurements in the compression level I have to have. I have syndactyl (webbed fingers) so OTS gloves literally cut into the webbing between fingers (very painful) and leaves open sores - not a good idea when dealing with LE.

Perhaps you could call the Facility/LET you will be seeing while in the States and ask for input/suggestions until you will be seen. Perhaps you could also check with Medical Supply stores in the town you're going to or Mastectomy Salons in the town if it's a larger town that has one/some.

Have you looked into a night sleeve? Could be used for flights. Mine is a Solaris.

Wrapping is not only knowing how but also having the right materials to use.

Do the best you can.

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/25/2009 AC Surgery 10/21/2009 Lymph node removal: Right; Mastectomy: Right Chemotherapy 11/11/2009 Taxol (paclitaxel) Radiation Therapy 2/4/2010 Breast, Lymph nodes
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Mar 8, 2017 08:50PM nye1980 wrote:

No, I have not been diagnosed. I just thought it was a good idea to wear one preventively?

I've gone back and forth with the distributor of the German sleeve and if it fits my upper arm, it's inches loose at my hand and wrist. So I don't think that makes any sense. Ultimately I might have to just go without and hope for the best. I'll have way more options when I'm in the States (Seattle).

Dx 6/1/2016, DCIS/IDC, Right, 2cm, Stage IIIA, Grade 1, 4/28 nodes, ER+/PR-, HER2- Surgery 6/15/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Chemotherapy 7/19/2016 TAC Hormonal Therapy 10/15/2016 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 12/5/2016 Whole-breast: Lymph nodes, Chest wall
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Mar 8, 2017 09:13PM ElaineTherese wrote:

Hi!

There's actually quite a bit of debate about whether or not someone who is only at risk for LE should wear a sleeve as a preventive measure in a plane. Some LE therapists say yes; some say no. I have also had several lymph nodes removed (20 in total), and I've never worn a sleeve to fly. I still haven't developed LE. Best wishes, whatever you decide!

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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Mar 8, 2017 10:51PM - edited Mar 8, 2017 10:53PM by hugz4u

Yes and then there are others here that did get le due to elevation on flight. Have you seen what a water bottle does in flight. Yikes... I hope that's not my arm. Yup everyone makes their own decisions on flying and it should be that way. Tough ain't it,this le beast!

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