Topic: Summer strategies?

Forum: Lymphedema — Talk with other about how to lower your risk of lymphedema and how to manage it if you've been diagnosed.

Posted on: Apr 15, 2022 04:02PM - edited Apr 15, 2022 04:16PM by kriserts

Posted on: Apr 15, 2022 04:02PM - edited Apr 15, 2022 04:16PM by kriserts

kriserts wrote:

Hi, I've had lymphedema for several years, but last summer it got worse and I had the massage and wrapping and started wearing a Tribute night sleeve and the custom flat knit sleeve during the day, so compression pretty much 24/7 for six months.

I'm sorry, I just can't see wearing this heavy, ugly flat knit sleeve out in public in the summer. (This is not the type of sleeve where you can buy a pretty pattern.) I've tried to find blouses I might wear, or summer sweaters, but I live in NYC and it gets hot and humid and I hate the heat. I can accept wearing it inside my house, but when I go out, I want it off.

What have other women here done? Do you 1. just wear it 2. cover it somehow and if so, what are your tips? 3. chance going without it outside?

And if you don't wear it out of the house, how troublesome have you found that? Does the swelling bounce right back? Or are you able to get away with some time out of the sleeve?

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Apr 19, 2022 01:42PM piperkay wrote:

From when I first started wearing sleeves, my PT said I could take a few hours off now and then, though I'm probably in the mild category, and not everyone would get the same advice. In the summer, when heat seems to aggravate, I wear it during the day but maybe not in the evening when it's cooler, or maybe not if I'm going to be in the air conditioning all day. Per my PT's recommendation, I've been using the Mediven brand, and the sleeves pretty comfortable even in the heat, but it's the glove that really bothers me more. I have a Juzo "pretty" sleeve which is way more comfortable but the PT says it provides much less "containment," so I only have the one which I wear when I don't want to be so obvious. Funny story, though: once when I was out while wearing a black set, a young guy thought it was a cool accessory! And another time, a grocery store employee - another young man - asked me where I got it because he needed a sleeve to cover his tattoos while at work! HAHA!

At my last appointment with the BS, she told me she thought I might try to "wean" myself off the sleeve somewhat, wearing it during the week but not on the weekends. Not sure I'm ready to do that, but at least I'll consider it. They are annoying, for sure. But again, this advice probably isn't for everyone; I'm just sharing my own experience.

Dx 11/2018, IDC, Right, <1, Stage IB, Grade 3, ER-/PR-, HER2- Surgery 12/9/2018 Lumpectomy; Lumpectomy (Right); Lymph node removal; Lymph node removal (Right): Sentinel Surgery 12/10/2018 Chemotherapy 1/16/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 1/17/2019 Other Radiation Therapy 4/23/2019 Whole breast: Breast Radiation Therapy 4/24/2019 Whole breast, Radiation boost: Right breast
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Apr 19, 2022 03:24PM kriserts wrote:

Thanks @piperkay, that's helpful. What's funny is I'm a competitive cyclist, and I wear the black Juzo sleeve when I ride. My team kit is black so it matches. I've been asked about it by curious young men, as well, who seem to think I'm making a fashion statement. :)

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May 6, 2022 05:21AM dita wrote:

Ive had lymphedema for nearly 9 years and I feel your pain. I wear cotton long sleeve shirts with a beige sleeve underneath. My wardrobe seems to be full of white cotton shirts now!

I also wear a black sleeve with active wear because i see a few people qith compression sleeves working out so I feel it goes less noticed.

I wear short sleeves at dinner for a few hours without my sleeve.

I wear a night sleeve which manages it better so that I can go for a few hours.

I still hate it but you do get used to it.

Dx 5/2013, DCIS, Stage IV, Grade 3, mets, ER-/PR-, HER2- Targeted Therapy 6/2/2013 Perjeta (pertuzumab) Targeted Therapy 6/2/2013 Herceptin (trastuzumab) Chemotherapy 7/2/2013 Taxotere (docetaxel)
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May 6, 2022 02:22PM kriserts wrote:

Thanks, @dita. I've been thinking along the same lines!

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May 6, 2022 02:56PM ratherbesailing wrote:

I'm sorry you're going through this. My only suggestion is that Coolibar specializes in UPF clothing, and they they have a lot of tops and dresses in very light fabrics. Many have thumbholes that would cover the sleeve, and they come in some nice patterns and also solids. I love their dresses in the city in July-August. I know that doesn't address the issue of the sleeve itself but it might make it more bearable if you do need to wear it out.

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