I am glad this thread has started - I had full node clearance at the same time as my mx in December 2011. I too had lots of info on how to avoid Lymphoedema and have no idea why I suddenly started with it at the beginning of this year. Now it seems that it is all a bit vague about how to control it. I have seen a specialist nurse twice who has shown me how to do MLD - and on the second visit fitted me with a compression sleeve with mitten. Why are there no choices with colours - I was give one in beige that gets dirty very quickly. I am told there are black ones available but only on prescription - so I am on a mission to get one. I’ve seen fancy ones on the internet, but they are expensive.
I too am getting weary of people asking what I have done to my arm/hand - I need to get inventive with how I respond. As for the summer and what to wear…I have bought a tattoo sleeve that will fit over my compression sleeve - maybe this is the way forward!
Hi everyone - glad it’s not just me missing something about lymphodema services. I can’t believe the gap there is in this field. I suppose in the scheme of things we’re not a big number - I’ve seen estimates of around 100,000 people with lymphodema secondary to surgery which is a very small percentage of the general population overall.
Hi Supertrouper - I know where you can get a black sleeve and that’s from a company called Sigvaris. I have their beige ones on prescription but I’ve just ordered two privately as I need some spares and it’s been no problem. Make sure though that you ask for a VAT exemption form (chronic lymphoedema) otherwise you’ll get charged VAT.
The prices vary depending on what you need - not cheap - mine work out to about £37 each without VAT. You can get with and without all in one glove (or mitten as they call it)
the only thing is making sure you get the right measurement and I wonder if you could get this via your lymphodema nurse specialist? My nurse says its better not to just order over the internet without getting measured by her first because it could do more harm than good.
Perhaps you could ask for this for your next prescription and then, if you like it, get another privately.
Hear, hear! I had a sentinel node biopsy followed by an axillary clearance so was at high risk of developing lymphoedema anyway, but how I wish I had known that you shouldn’t lift your arm above your shoulder for 7 - 10 days after surgery. Like Quail, I was very proud of my movement straight after surgery and showed the physiotherapist (on the day after surgery) how I could get my arm straight up next to my ear, and she said “well done”!
I pay for MLD privately every two weeks as I battle to wear a sleeve as my skin reacts to the silicone grip (also a Sigvaris). I don’t really see any difference but guess it can only be a good thing to shift the lymphatic fluid regularly so it doesn’t get too stagnant. I had cellulitis three weeks after my second surgery which put me in hospital for a week so am very anxious to avoid a repeat.
I think it would be an excellent idea if BCC could provide separate sessions for people who have developed lymphoedema and agree the current focus everywhere is on prevention (great, but people still get it and it is a huge thing to learn to live with). SLD can easily be taught in groups (the Marsden run very occasional sessions) and although there are leaflets available which explain the technique, it is useful to have someone show you what pressure to use (it’s very gentle).
There’s no money in lymphoedema research but it is, I think, the worst side effect of primary breast cancer treatment and perhaps we should shout a little louder for better care.
Moya xx
I wondered if those on this thread are interested in keeping in touch? I used the forums regulalrly through my chemo but the lymphodema thread is much quieter.
Katy- I tell people who ask its to manage swelling, and for those that go further, say its post op swelling. Most are shocked to hear its a permanent issue. I always feel it is a sign of the fact that I have had breast cancer.
I know what the best clothes to wear are! There was an article in the LSN magazine- they are those peasant-style tops- loose cotton, slightly billowing at the arm, stop at the elbow, round neck. However, bit trickier when you also have to factor in a mastecomy on the opposite side! Saltwater do t-shirts that come to the elbow (this was a tip from the last Vista magazine), though not cheap. Also, there is a bag for backs (again a Vista tip) a firm who produce ruck sack type bags.
I have black sleeves with gauntlets. You can only get the black ones (I think), if you have made-to-measure. But, black is not so good for summer. I can’t use Sigvaris Elinda. I have JOBST, class 1 aand a class 2 sleeve. I have a sigvaris for my other arm which has mild lymphodema- its so soft. As far as I can tell, I can’t use Chic Compressions as I need a sleeve and glove incorporated, but I think they do some interesting designs.I suspect that all of us will have differences in where our swelling is and how it responds which is why the sleeve issue is so much about trial and error.
I’ve said it before, but will say it again- using a massgae ball on my hand really makes a huge difference to the swelling on the back of my hand where the swelling in the knuckle and fingers restricts my movement.
All the above should be in one place, together with some of the tips in other threads. Come on BCC if you are reading- we will work with you on this issue!!!
Rattles
Would def like to keep in touch , as this is such a new issue for me any advice is an advantage.
I wore kaftan style tops when I was on holiday recently and only one person commented, funnily enough they had a relative who had bc so they knew what it was. My summer wardrobe is all short sleeve tops so will have to have a total rethink or build up the confidence just to show my arm, hand.
Do any of you have the sleeve and gauntlet on display?
Rattles your tips are great, thank you xx
Count me in. Although I have grown used to wearing the sleeve/mitten, and most of the time don’t think about it, when it matters, when I need to look “nice” or feel really self confident at work or some event I just HATE it. I reach out to shake someone’s hand and there’s that freaking mitten. Or I put on a cute jacket or sweater that I’ve always loved and the cursed thing is tight on my right arm and looks ridiculous. I bought (at great expense, although it was on sale) a lymphediva sleeve and glove, but I can’t decide if that’s worse–I fear that it just looks silly and not “brave and chic”. Black is my default colour for looking nice–the beige looks so bandage-y.
Meanwhile, something I’ve learned: wool knits are more stretchy than acrylic or cotton. I discovered a company called woolover that sells wool jumpers in all sorts of weights, and I am slowly switching all my jumpers to wool (yes, I know they are a bit of a pain to wash). The fat-arm sleeve stretches out and then back without becoming unpleasantly mis-shapen. I have to be careful with those peasant tops–I bought one, and like it, but the sleeve gets stuck on my armsleeve and is a bit trouble-making. Don’t you HATE how the armsleeves catch on your clothes as you try to put them on?
xx
I think keeping in touch is good although I’m going to try just to stick to the lymphodema threads as I get side-tracked and end up spending too much time on the forums - I had weaned myself off!
Quail - it is a real issue getting things with sleeves big enough to cover the compression sleeve and also that don’t catch.
I bought a lovely Indian shirt from East about 3 years back - very feminine, white cotton with an embroidered white pattern (ethnic) and lovely style - it’s great to wear over things in the summer as it’s so cool. I haven’t been able to find anything like it since. Most white cotton shirts are so plain and not feminine or too fussy and lots don’t have full length sleeves or aren’t fitted to wear not tucked in.
The other thing I do use is very fine, light white or cream cardigans but the flowing summer type. I’ve got one that is perfect as it has a loose weave and is very cool to wear. I’m going to get one or two in other colours this summer as I use them all the time.
There is such a market for clothes for us women. I also think there are loads of women out there who don’t like their arms and also loads who want to keep out of the sun.
Saw my MLD therapist today who thinks that MLD isn’t going to reduce the volume much and has suggested bandaging but every day for 10 days. She said she’d train my husband up to do it. Can’t say he’s too keen but then I don’t blame him!
Hi Quail, That’s a good tip re. the wool. What I hate is when you get bobbling on the sleeve itself as well as the compression sleeve. Like you, I can find clothes tight in the arm.
Elinda, my partner learned how to bandage my hand. To be honest, it had upsides and downsides- on a good day, it helps him to understand and to feel he can do something. We also have a giggle and a chat while he does it. On bad days, he resents it and wants to wtach the sport and then I get cross. I remind him its cheaper if he does it and threaten him with the cost!!
The cardigans are a good idea, and I also wear them, with sleeves that stop at the elbow, its hard in the summer though. We are going on holiday next week and I have no idea how to cope.
Another tip if you wear a beige sleeve which stops at the wrist- wear a large cuff type bracelet- I met a young woman who did this and I swear you did not notice the compression sleeve It also looked stylish. Not so, for those with gloves who need Trinny and Susannah or Gok Wan!
Any tips for managing the heat and to avoid mosquito bites?
Rattles
Rattles - my lymphodema nurse suggests putting the sleeve in the fridge first (if you have one where you’re staying on holiday). The other tip she gave was to carry one of the Evian mister sprays and you can spray that over your sleeve as well as on you. Also one of those mini fans you put in your handbag or pocket to carry around.
I’m also going away soon and dreading the heat for this reason! I’m hoping that these tips help because I’m also having terrible hot flushes at the moment.
Re mosquitos - that’s more tricky if you’re like me and obviously nectar to a mozzie. I went somewhere with lots of mosquitos last year and managed to avoid getting bitten on that arm. I made sure I always had it covered when I went out in the evening and, if you wear your sleeve that helps but I have been bitten through it once. Insect repellant only works to some extent and I find if I miss the tiniest spot on my body I’ll get bitten there. If you do get bitten, put some antiseptic on it and keep it covered so it doesn’t get infected - that’s what you’re trying to avoid most.
Also take some antibiotics away with you in case of infection. This was recommended by my nurse. I’ve got to ask my GP so will be interesting to see response. I’m not sure what antibiotics to get so will have to ring the nurse. obviously you only take them if you see any sign of infection in your arm such as redness, heat, or additional swelling.
The problem with having a glove on the sleeve is that the sleeve is too light in colour for me so I’ve already got tanned fingers and it makes the glove even more noticeable. The sleeve I used to wear was a great caramel colour which was ideal in the summer as it matched my own skin colour. This year, it’s going to be much more obvious. I wish they did sleeves in a range of colours like they do foundation!
Re the bandaging, I’m selling to my husband on the cost issue. I’ve said it will mean less massages at £35 a time and that’s encouraged him! it will be a chore and he’s very good so I do think I’m lucky.
You all sound so experienced regarding lymphoedema, have you had yours for a long time?
I have been looking at sleeves (religious) and they do different colours, they are lightweight so you could mix and match is it ok to pop them on over your sleeve? They are a bit like the fake tattoo sleeves. xx
The recommended “just in case” antibiotics are:
Amoxicillin 500mg tds or, for those allergic to penicillin, erythromycin 500mg qds or clarithromycin 500mg bd. http://www.thebls.com/consensus.php - you could show this to your GP if they are reluctant to prescribe. Cellulitis can progress like lightning so I think it is well worth keeping antibiotics on hand, and especially for holidays.
Moya xx
Thanks Moya, that’s so helpful and great I can have something to show my GP
Katy - i’ve had lymphodema for 2.5 years now. It was so mild to start with that I didn’t need to know that much (or rather thought I didn’t!). I wish I had known more from the start. There is so much to learn and pick up and you’ll get loads of information from other women in the same situation. Don’t be afraid to ask if there’s anything you want to know. I’m sure one of us will be able to help.
Elinda x
Sunburn!!! Avoid sunburn–theoretically (who would know who hasn’t left the country) you can burn through your sleeve, and I think (someone confirm?) that the lymphoedema arm burns more easily–so you want to wear sunscreen during the day, and if you are sweating don’t forget to reapply it. I know that sunburn can easily lead to cellulitis. I wonder, but have never put it to the test, whether baby powder would help you put your sleeve on if you were damp from the heat. When I went caravanning last summer I got a mosquito bite the first night in the crook of my arm. I FREAKED out (as you can tell, Katytc, I haven’t had it long enough to be calm about it–just long enough to be well and truly sick of it!) sprayed it with my spray antiseptic, put a bandaid on it and put my sleeve on. I was scared I was going to scratch it, but it really didn’t bother me too much. After that I was religious with the application of spray-on bug repellant.
My gp gave me a week’s supply of antibiotics without a peep although I preference my request with “my lymphoedema nurse suggested that it would be wise to…” so he didn’t think I was making it up. I had also had cellulitis, so that may have helped to convince him I knew what I was about. It is important to know the symptoms, it needs immediate treatment since if you ignore it you wind up in the hospital with iv antibiotics–happened to a friend of mine!
How much are your arms swollen? I keep wondering if I should get someone to teach me (and OH!) to bandage my arms, and if that would reduce the swelling. You can wear the bandaging all night can’t you?
Meanwhile, what are these coloured sleeves you are talking about Katy? They sound nice.
Q. xx
I have been diagnosed with grade 2 lymph, it seems in the uk you are graded 0,1,2,3,4. I thought I may have it as had two small patches one on my hand and the other below my elbow joint. After being measured it was only then that I found out it was my whole arm, so that was a shock. I also had a sore shoulder and heavy feeling arm.
The coloured sleeves, I found them on ebay! Was looking for arm sleeves/covers etc and up popped these islamic modesty sleeves, liked them because they are plain and you could mix and match. Not expensive. Will order a couple today.
Cellulitis what is it and why would you get it? xx
Rattles - you mentioned the spikey massage ball. I’ve got one of those but don’t know what to do with it. Can you advise? I’m getting a bit of a problem in my hand but it’s not bad and I’d like to keep it that way.
Katy - this is info on cellulitis:
Basically, it’s a nasty infection so that’s why we have to be ultra careful about cuts, insect bites etc. Because our lymph isn’t draining properly, we are more at risk of developing than other people. That’s why it’s advised to take antibiotics with you on holiday so that if you see any signs of infection you can nip it in the bud very quickly before it develops into cellulitis. If you’re at home obviously don’t wait if you see signs of infection and get an urgent appointment wiht your GP. Also always wash any cuts/bites - use an antiseptic spray or cream and keep the wound/bite covered. I always carry an antiseptic wipe and a plaster with me wherever I go. You can buy the wipes in the first aid section of Boots, Superdrug etc.
Hi All
re. the massage ball- you literally roll it up and down and around your hand, arm etc. I was advised to use a gentle pressure only, but to be honest, when I see the back of my hand is going firm (do you know what I mean, less puffy and liquidy and more firm), I do apply it quite firmly!!
I have just bought 50 per cent DEET insect repellant from Boots, but not sure about the DEET…no more natural alternatives?
I havent opened the link. But just to say I have a 2-week supply for antibiotics. My consultant said this would be the minimum required.
In terms of swelling, I don’t know what grade I was, but do know I lost 1,000 mls of fluid after the treatment, and have lost a bit more than that.
Rattles
The sleeve covers arrived yesterday, really pleased, covers all of arm but not hand, looks pretty and the best part is will now be able to co ordinate because lots of different colours on offer !
Anyone have any advice on shoulder pain?? Would be so grateful xx
Hi Katy, about shoulder pain: 1) if my shoulder is swollen it aches, so getting the swelling down (and keeping it down) is really important to me. My arm always looks ‘fat’, but most of them time it doesn’t feel fat; if for some reason I get a flare-up, it looks REALLY fat and aches. I do think the sld that I do helps, although it doesn’t feel like it. I have also found that the Haven excercises help me to keep movement in my shoulder. It hasn’t been “right” since radiotherapy, but it usually doesn’t pain me these days unless I am really waving it about.
Elinda, did the MLD help?
Glad the sleeves are nice, I keep meaning to go on-line to look for them. Now it’s getting (supposedly!) warmer, it is more important to have a way to look less like I’ve broken my arm. My OH pointed out that I now hold it as if it were broken or injured–I try to remember not to, but it seems to be the default. Curses.
I too carry antiseptic and plasters with me–I first realised I had lymphoedema when I developed cellulitis, and it is scary and unpleasant–and often makes you feel a bit like you have flu. I hadn’t thought about those wipes, I think I’ll get some for when I go on holiday.
x
Thank you Quail, am doing exersises and wearing sleeve and glove nearly all day, until bedtime, do notice that ache lessens when wearing sleeve etc but it doesn’t go away. I don’t think my arm looks that swollen but I do have patches where it’s obviously swollen and noticeable. Still feel so very new to all of this…do you have meds for shoulder pain? I take diclofenac for something else but it doesn’t help the shoulder.
Also if you have obvious areas would that benefit from MLD?
Will now carry plasters and antiseptic, thank you for your help, to a newbie the advice is invaluable xx
, as this is such a new issue for me any advice is an advantage.