Hi
I am at risk of lymphoedema due to ANC, but no symptoms so far so am hoping I might escape. I’ve got the leaflet about wearing gloves for housework and garden, avoiding infections, sunburn etc etc.
I have read elsewhere that that wearing a sleeve during long haul flights (and also in high mountains, not UK mountains as these are low) is advisable as a preventative.
Is anyone here doing this or considering this? Where is the best place to a get a sleeve for prophylatic use? Presumably they have to be made specially?
And presumably you can’t get one on the NHS unless you actually get lymphoedema
Bumping this up for blackSwan
I go on a lot of long haul flights and am considering buying one for my arm even though I only had a SNB with 2 nodes removed. I was just going to buy the one’s that runners use as this is the only place I have seen them for sale. The running one’s are called compression sleeves and are sold widely online.
Dyane
It may be worth getting some expert advice on runner’s sleeves if they are designed for a different purpose? Otherwise there could be a possibility of increasing rather decreasing the risk?
AFAIK the lympho sleeves are quite complicated with different compressions at different points.
I’ve never seen one, so I could be talking rubbish…
Hi having been recently diagnosed with lymphodema after ANC in February (and being told I had a very small risk!) I would just like to say that I was advised by the lymphodema nurse that they measure both arms and then use some kind of formula to work out how badly affected you may be. I am mild (3-4 % difference between my good right arm and my dodgy left one) but this is enough to be given a sleeve to wear. But I was told it must be measured and fitted correctly as it causes more problems / make things worse. You can buy the sleeves online (mine is a Jobst) but pls be sure you get the right fit.
Spooky, do you wear a glove or gauntlet as well as the sleeve?
I’m just starting down that road, and seeing the LE therapist on Friday. My swelling is intermittent, and I am currently on antibiotics for an infection in that arm. Not sure, but think it was mosquito bites that started me off!
Short of wearing head to toe DEET or some sort of armour plating every time I step outside the door, it is almost impossible to avoid the lil boogers here atm! “_”
I think I will be advised to start wearing compression. I wore the temporary one that she gave me before, made out of elastic tubular bandage that she cut for me, over the weekend, and it helped my arm, but my hand tended to swell. This would be my concern if wearing one of those runners’ sleeves …
Hi Morwenna I am lucky as it is mild enough to just wear the sleeve - the swelling is mainly in the upper arm (I had to have a vein graft from that area when my recon failed - long story! and I think it made it worse). I have a little bit in my hands (can’t get my wedding ring on anymore) but not enough to warrant a glove at this stage. I am now able to go swimming as all healed up now from last op so I am hoping that will help. Who knows? I did all the exercises and was really careful post clearance - but I still managed to end up with lymphodema less than 6 months post-operatively. The sleeve definitely helps - I notice the heaviness etc when I am not wearing it at night - I have much less discomfort when wearing it. I hope you manage to get it sorted with your LE therapist on Friday. It is rather a pain (to put it mildly!). And, BTW, hope all going well with you? best wishes Em x
Hi Girls,
Hope I can help a bit. I’ve been living wih lymphdema for over 5 years and it’s a pain, but I’ve found ways round the worst of it. I did the LE prescribed exercises religiously, wore sleves full time, and also did a LeBed method class at Haven and Tai Chi locally all of which helped. lebedmethod.co.uk/about-the-lebed-method If you can’t get to a Haven centre they have a dvd which may have exercises or they might be able to advise on how to get a LeBed dvd. Eventually I got to the point where my arms are almost normal unless I do something that triggers a puff up. I’ve discovered most of the things which will cause problems and either avoid them or do in short bursts with rest and gloves in between sessions. I find I’m able to do many of the things they sugggest avoiding with no problems, but I was very cautious about trying them and built up gradually.
There are different sizes and compression classes for off the shelf products so you would be best to get advice from a therapist about what is right for you. I have a selection of compression garments. I have an off the shelf sleeve from Jobst (I think) for my left arm. I also have a Haddenham glove (also off the shelf) for the left hand and the LE therapist warned me not to use the sleve without the glove except for very short periods so I defo wouldn’t use an athletics sleeve. She chose the size and compression class I needed. My right arm is worse, although I had level 3 ANC both sides and left arm has taken all sorts of abuse so don’t know why that should be. For my right I have a custom made Juzo sleeve with gauntlet incorporated. Therapist takes detailed measurements, about every inch up the arm, and sends them off to have the sleeve made. I also have an elvarex soft seamfree glove and that is the most customised as the whole hand and each finger is measured in detail and the glove custom made. It is the best ever as its the only one that relieved swelling in the fingers properly. All of these are compression class 2, although some makes feel very light and others feel very heavy and tight so you couldn’t tell from looking at them or touching them how much of a squeeze they give. Generally I only wear the right glove unless I have a problem or I’m doing something that I know might cause a problem and can’t avoid it.
I get gloved up for a flight and keep them on for at least an hour after landing. Have got away with it so far. The lady who devised the LeBed method swears it was a flight that triggered her lymphodema. Don’t know how much of a node clearance she had. Would have thought SNB has low risk of lymph, but if you’re worried and there are precautions you can take, why not. It’s supposed to be the pressure change that causes the problem, so I suppose high altitude could be a problem although not something I’ve heard of.
Morwena, sympathise with the mossies. They find me so delicious that even the industrial strength deet doesn’t discourage them. I ran out of my ususal mossie bite cream on holiday last year and started using standard Savlon and found it actually worked better at reducing the inflamation. LE therapist suggested off the record trying an Avon Skin So Soft oil as a repellant. I haven’t yet, but it’s the one that contains citronellla. Apparently the US military use it in jungles!
Don’t know how to go about getting prophylactic sleeve. My arms swelled up straight after surgery. BCN good start?
GF
I’ve just phoned the Lymphoedema support network for advice.
I was told if you don’t have lymphoedema, but are at risk from it (my situation as I had ANC), yes it is a good idea to use a compression sleeve on your arm for flying etc but no you don’t have to use a special lymphoedema one just a tubigrip one that you can buy in Boots is fine.
I asked about other tips for people at risk. I’ve read the leaflet I was given by my nurse, so I know about avoiding cuts, scratches and bites and heavy lifting etc etc, but I was interested in additional everyday dos and don’ts that I can easily follow without a major adjustments to my life.
Here are a few:
Opening and closing your hands. Also do it with a stress ball. I’d already got myself a nice extra soft gooey gel one from Amazon which I really like. I don’t like the foam ones so much. The gooey gel feels sooo nice (or perhaps I’m just weird). Great for fidgetting while watching telly.
When getting back to cycling avoid standing up to cycle up hills as that puts a strain on the arms. Or if you do, build up gradually. Start cycling on the flat first.
Swimming. Really good for avoiding lymphoedema and good for those us with back problems - I have a bad disc at present. I will start regular swimming once I have finished the radiotherapy.
Get husband (or friend) to pump up your bike tyres. I have a floor pump and high pressure tyres so you do push quite hard at the end. I won’t do it again now.
Has anyone else got (or been told about) any other useful everday tips (in addition to the standard ones in the leaflet)?
In the end I decided to order a Sub Sports compression sleeve from Amazon. I decided I really wanted something a bit better (and hopefully more comfortable) than a tubigrip…
I’ll see what it is like when I arrives. It is designed for sports and I’m thinking of using it for things like cycling and hiking (especially if using trekking poles).
Hi Blackswan
I am very surprised at the advice you have been given as it flies in the face much I’ve read about this - was it given by a specialist nurse or medical person? If not, I’d proceed with a whole lot of caution as the very last thing you want to do is increase your risk of lymphoedema. May I suggest that you e-mail the ‘ask the nurse’ at BCC and get a second opinion.
If it’s at all possible I would get your BCN to refer you to a lymphoedema clinic or nurse specialist and they can advise if you need a sleeve and, if you do, measure you for it and show you how to put it on. Sleeves don’t usually have to be made for individuals. Usually you fit into one of the standard measurements. The reason you want someone to measure you is that they do measurements all up the arm so that they can make sure it’s not going to be too tight at any particular point. If the nurse says you have to pay privately, then they are usually in the region of £40. I you do wear a sleeve when flying then it’s important to put it on as early as possible when you get up that day and keep it on for at least a couple of hours afterwards.
One of the main things I try to avoid (and I have lymphoedema) is carrying too much with my bad arm. It’s so easy when you’re trying to do lots of things at once, like getting your keys out, to switch all your bags to your at risk arm. I’ve found that I have to consciously think about this. Travelling is a good example where you might easily hold too much in your at risk hand or put something over your shoulder. It’s very easy to get blase about lifting things.
With bites, cuts etc there is a limit at how much you can avoid them. I’d be careful but the main thing is to make sure you always have something at hand to treat a bite or cut (even a small one) with. When I’m out I always carry an antiseptic wipe and a plaster with me. What you’re trying to avoid at all costs is infection. At home I also have antiseptic cream. Remember to keep bites, cuts, burns etc covered.
Hope you enjoy your holiday
elinda xx
Elinda45,
Thanks very much for this post. I think your information is far more accurate than the advice I had received earlier (see my earlier post).
There seems to be so much conflicting advice out there!
I asked my BCN, but she had never even heard of at risk people using a compression sleeve for flying!
I’ve now found a really good US website (National Lymphedema Network lymphnet.org/home.htm) that has “Position Papers” on all sorts of topics like exercise, risk reduction, and flying.
Exactly the sort of thing I was looking for.
The papers seem to be well-thought out, updated, as evidence-based as possible (but some things are more expert judgement) with references to published papers for everything, so you know the basis of the guidelines/advice,
I found the following to be most useful:
lymphnet.org/pdfDocs/nlnexercise.pdf
lymphnet.org/pdfDocs/nlnriskreduction.pdf
lymphnet.org/pdfDocs/nlnriskreduction_summary.pdf
lymphnet.org/pdfDocs/nlnairtravel.pdf
The NLN does not specifically recommend prophylactic compression garments for air travel (for people who are only at risk), but they should be considered - see their air travel paper. At risk people should make their own decision on this based on information and their own risk factors. People with lymphoedema are advised to use compression garments.
The NLN say that if you do decide to use prophylactic compression when flying get one fitted by a specialist - do not self buy. Incorrect compression/badly fitted garments can increase risk. They also say that if you should also wear a glove or gauntlet with the prophylactic sleeve.
In the NLN Risk Reduction paper (see above link), they say that wearing a compression garment during exercise is probably unnecessary for At Risk people unless swelling occurs during exercise, if exercise is more intense than usual or in cases of signficant over-activity. There is different advice for at risk people and those with lymphoedema.
I found these papers very helpful and I felt confident that the authors had considered the available evidence carefully when making recommendations and had flagged up areas where no clear recommendation could be made,
I certainly felt more comfortable following the NLN advice compared with the advice I was given by the UK Lymphoedema Support Network. I suspect the former has much greater funding.
I hope others find also find this helpful.
Hi Blackswan
I haven’t personally had good experiences of using the UK Lymphoedema support network. I know others have found them helpful and their leaflets etc are useful but the helpline doesn’t always offer the best/most accurate advice. I don’t think it’s manned by anyone with clinical expertise but maybe it just depends who you get.
The above articles you’ve cited and that US organisation seems much more useful to me.
I do now have lymphoedema and have found an astonishing paucity in terms of actual research evidence on things. Quite a lot of advice seems to be based on anecdotal evidence or takes a logical approach rather than an evidence-based one.
I am surprised at your BCN saying she’s never heard of people at risk using compression sleeves. Some women clearly do and the advice I was given by a lymphoedema nurse when i was ‘at risk’ was to use one if I was going on a long flight but to get fitted for it properly.
Hopefully over time all of these concerns and questions will get fully answered by research but it’s not a well-funded area so in the meantime we do the best we can with the info we have!!
Elinda xx