Hi Girls
Am back after 6 week rview with privaye nurse practitioner. Arm has gone down about 3% which she says is good. This has been done by self massgae and exercise and wearing the dreaded sleeve for heavy jobs and not all the time as NHS bad attitude nurse told me!!!
Have now got some kineso taping on which she told me to leave on for a few days - have either of you had any luck with this?
Take Care
Alise x
Hi Alise
Good to hear from you and good news about the reduction. Can’t help with the kineso taping, but at my last appointment they mentioned trying this if my arm hadn’t improved in a couple of weeks, which it hasn’t. So I’ll be interested in how you get on.
When you weren’t wearing your sleeve, did you still use your arm?
Hi Alise, and Hi, Lynni, too
Brilliant news about the arm reduction; long may it continue.
Re: the kinesio taping. I’ve had some in the past and I’ve found what I think are the three key factors in determining how effective it is for me:
1 How wide the strips are cut - the narrower they were, the more quickly they started to peel off. No more than three strips from one length of tape worked best for me. Any fiddly little 5mm fronds were peeling off before I’d got out the clinic door and were obviously a waste of time.
2 The grade of kinesio tape used. The higher the quality, the longer it stays put and the more effective it therefore is. You can get some really good, coloured, fully waterproof kinesio (mine’s turqoise!!!) that sticks like the proverbial s**t to a blanket.
3 How skilled the person is who applies the tape. Makes quite a difference.
That said, even with all the above in my favour, I didn’t notice a massive difference (for me I think it worked better for breast oedema a few years ago than for my arm recently, altho’ I would say it did do some good), but that’s just me and I know some people feel it really helps them.
X
S
Hi,
Sorry to butt in on this - I’ve had kinesio taping since last summer and it’s worked a treat. My swelling hasn’t been bad enough for a sleeve (phew - hope I haven’t spoken too soon).
The tape that’s been used on me has been boring skin colour and the best quality one can’t be ordered any more so just had to go to a cheaper one which is narrower. It looks like there may be a slight allergy to it though as my skin has been itchy and a bit red since I took it off though it was fine while it was on. It seems to stick really well to my skin. I’m back to see them on Weds so hopefully I can still have it and it’s just a blip ! Or perhaps even if I need a break for a month, it will be ok as the swelling is really low at the mo.
The swelling is bad for me above my clavicle area and shoulder - at bad times, it swells to about 2 inches higher so I look like hunchback of notre dame. The tape varies slightly in the area of application depending on where the swelling is worse but usually it starts on the chest wall where I had my mx (no reconstruction), over the shoulder and all the way down my back to hip area. Another bit usually then goes from the back of my arm and down my side to the front groin. Make sure to soak in the bath for ages when you take it off and do it carefully - no ripping off to limit pain !!
As long as I can still have it, they are going to teach my OH to do it but if he messes up, it’ll be back to physio !!
Good luck and hope it works as well for you as it has for me.
Liz
Hi Lizcat
No, no, you’re not butting in at all!
Very pleased to hear that the kinesio tape has worked so well for you, and I hope it continues that way:) Don’t these swellings pop up on some awkward places? (I understand that it was used to treat sports injuries for years, again with some success. I spotted a few athletes wearing it at the Olympics last year). I think I may have slippery/oily skin, meaning it often doesn’t grip so well on me, I think.
No more high quality tape? Why is that? Do you mean that the NHS is not allowed to order the best stuff, or that it isn’t being made any more? According to the UK kinesio tape website Kinesio ‘Gold’ can be ordered directly from there. I wonder who supplies the NHS…?
Bye for now, all
X
S
Hi,
Although not ‘official’ it looks like the wider, better tape can’t be ordered as a cost thing…allegedly the narrower stuff is exactly the same just narrower. My physio is going to try and get the original stuff by some means or another ! I wonder if I’ll be able to get it on prescription, especially if it’s free come 1st April - may be worth exploring…my surgeon thinks it’s ace stuff as well.
This week I’m seeing the specialist lympho nurse so will doubtless get measured. Have to see if she’s got any other expensive tape or other handy tips - she’s the font of all knowledge round here according to my physio but my physio has been brill anyway.
I saw the stuff on Olympic athletes but haven’t seen that it makes me any fitter, ha, ha - thought a sporty appearance might be a side effect !! My physio uses it for pregnant women as strips to support their backs apparently.
Liz x
Hi Lynni and all
Yes I still used my arm without sleeve - I was just careful not to lift anything heavy.
My nurse practitioer explained to me that some therapists( ie dodgy nhs one!) are much more dogmatic than others and it is because they haven;t had enough training to be able to distinguish between when a sleeve is and isn’t needed all the time so they just tell everyone to wear one anyway!!! I believe what she says because she is one of the leading lymphoedema people at one of the best cancer hospitals in the country.
SHe said a sleeve definitely did have a place in the treatment but not to be worn all the time because she said - and I agree - that the psychological reminder of bc every time you look at it outweighs the benefit.
What I think is very scarey is all the conflicting information you get.
The kineso taping is still in place but I have only had quick showers - no bath yet. I have been told to leave it on for 3-4 days and then ring her to see if I think it was of benefit and if so she will teach me to apply my own - ( that will be fun I am hopeless at anything like that!)
Take care all and I will keep youupdated.
Love Alise x
By th eway Liz - what percent was your arm when they said you didn’t need a sleeve - just interested as it sounds like you may be in a similar position to me. Mine was 19% and has gone down to 16-17%?
Love Alise x
Hi everyone
Alise - interesting info about not wearing sleeve all the time. My lymph nurse is actually a physio and runs the lymph clinic one day a week. Shes been lovely but it does make you wonder how much training is given, I was told to wear it all the time. I hate wearing mine, uncomfortable when hot etc and the constant reminder of bc. Yes it is scarey all this conflicting info.
I wish we all had access to an expert in lymphoedema, they should have one available in all areas. My clinic struggles to cope with the numbers of people attending, more money needs investing in training and in staff. Its becoming a bigger problem (no pun intended lol). Anyway got that off my chest.
I’m ringing her tomorrow about the kineso taping, so hopfully this may help. After the bout of Cellulitis before Christmas the swelling especially at elbow is just not budging.
Take care all xxx
Hi,
Mine was only 5% on my arm - it’s the swelling from the chest wall and above the collarbone that’s the worst bit by a long way and can get so noticeable. 3 weeks without taping a while ago due to hols meant the swelling could be seen through a t-shirt and had risen by about 2 inches up my neck.
Mind you the amount of weight I’ve put on, I could do with the tape over my whole body !!
Liz
Hi all
Alise, sorry to be so nosey, but I’m intrigued about your nurse practitioner. She sounds really good and knowledgeable and a genuine help to you, so how come you ended up in the clutches of a rather less empathetic NHS lymphoedema nurse? Was it duplicated activity on someone’s part? Or did you need to go via the NHS to get the sleeve?
Would go along with earlier comments that the training that lympho physios and nurses get isn’t thorough enough. I’ve had both NHS and private treatment for lymphoedema and the gulf between them is, frankly, huge. Bona fide private lymphoedema therapists are usually very, very good indeed and may often have access to low level lasers which are extremely useful in treating lymphoedema.
I think there is a lot to be said for not getting obsessed about wearing sleeves all the time, unless an arm is truly huge. They are most useful when the muscles beneath them are working. If you’re watching TV or reading a book, they are doing virtually no good at all. Your nurse is quite right Alise, they are a horribly visible reminder of bc. It’s a pity more effort isn’t put into making them more aesthetically pleasing, because some people understandably won’t wear them at all because they are so ugly, hot and uncomfortable (and who can blame them, lymphoedema after bc is SUCH a kick in the teeth) and they do get worse because of it.
I have to admit that once I’ve got mine on (not very early in the morning, it has to be said, usually between 10 and 11!!!), they tend to stay on until I’ve finished faffing around for the day. But my situation is slightly different in that I don’t have a good arm to rely on, so any heavy work has to be done with one or more bad arms; my options are more limited.(Also, I think you are all much more organised than me with your heavy work, by the sound of it - I’m not much of a housewife!) But they come off in the evening long before I go to bed, I’ll very often leave them off if I’m going out in the evening or for a special occasion any time of day. And I’ve got some coloured ones which look smart(ish).
I’ve come to realise that, provided I don’t try anything too far out (attempt on the world handstand record, perhaps) nothing terrible is going to happen to them in the space of those few hours. Also, I think it does my skin good to get the chance to breathe a bit, anyone else agree?
X
S
Thats what I’ve been doing wrong, its the handstands, lol.
I tend to wear my sleeve most of the day. I put it on after washing my hair and before drying it, leave it on until early evening. In the summer it comes off earlier because of the heat I get sick of it quicker. I think when I’m at work I use my arm quite alot, but when I’m off and doing anything, maybe I should take it off, I think your skin does need a chance to breathe.
I didn’t wear it when I went out for work Christmas do, and my arm had swollen considerably the next day - maybe I’ve been doing handstands when drunk too.
Take care xxx
Yep, it must have been those handstands and cartwheels down the ward that set mine off, too 
What a shame that one just one sleeveless night out at Xmas had such a bad effect on your arm, Lynni. This condition is just so untrustworthy!
Take care, all!
X
S
Hi Bahons
The reason I fell into the clutches of the NHS nurse was because my GP said that since the appt had come through I amy as well go as it was best to get all the treatment possible - Errm no I don’t think so!
I am sticking with my private nurse practitioner now. I get private health trhough work so I appreciate I am very lucky. My policy has allowed me 10 visits a year to her - which is about once every six weeks so that’s fine.
I just think it’s so unfair that everyone can’t have this level of care on the NHS.
WIll keep you all updated.
Love to all
Alise x
Hi Alise, and all
Your nurse practitioner sounds like a real diamond. Lucky you!
And your lymphoedema care seems to be excellent, which will do wonders for yur quality of life, I’m sure.
And I do agree that this is the level of care that everyone should get. There are ladies who post on here who are lucky to get seen every 6 months and then just get measured for a bigger sleeve each time. No treatment offered at all. Sadly, some NHS lymphoedema clinics have to set the bar very low indeed, usually through, as we’ve mentioned before, lack of funds and/or training.
X
S
Hi all,
Well been to see the lymphoedema nurse today and am reporting back. The idea had been to teach my OH to tape but as I mentioned, there appears to have been a bit of a reaction to the last lot of tape so she left that alone and showed him how to do massage instead (may be traumatic as he is a little heavy handed - think bull and china shop when he does stuff normally…). Apparently you can become sort of allergic to the tape and have to take a break. So to keep on top of the swelling, I’m going back on Fri for her to massage it all again with the poss of further massage next Mon before my next taping with physio next Weds. I’m also being referred for a course of 6-8 MLD sessions so I’m being well looked after. No sleeve for me as the arm isn’t too bad (it’s just fat !!) - shoulder’s my worst area by far.
Reckon I’m lucky with all this attention !
Liz x
hi all
I got myappointment and went today, top of arm is 13% but working out the full figures and the no effect on lower arm said it was mild at 8%. Hoping to contain with self massage, skin care and exercise. Fitted me for a sleeve but said probably just try it a few days at week when at work doing lots of repetative work or long days - they were lovely and they do a lot of work in the community at people’s homes and seemed to know what they are talking about - fingers crossed it doesnt get worse. Go back in 4 months but gave me their numbers and a support group info as well as lots of booklets etc.
The one little niggle I did have was she said she had to tell me that although not proven, it is possible that if you have any remaning cancer cells that the massage might move them round my lymphatic system - does anyone know if this is correct as did scare me a little?!?! xx
Hi lisaf
Glad to hear that you are being pretty well looked after, too!
I have heard this theory that MLD may help to move cancer cells (if there are any)round the body and I don’t know if anyone, anywhere has come to any kind of conclusion on this one.
It sounds perfectly possible, doesn’t it? But if that is so, surely anything that stimulates the lymphatic system (such as exercise!) should be avoided…!!! But it is known that mild to moderate exercise is good for lymphoedema AND reduces the likelihood of a recurrence, so where does that leave us?
I imagine that because there is not a great deal of research done on lymphoedema, no-one really knows at present and it could be a long time before they do. As for myself, my oncologist has no objections to MLD.
X to all
Thanks for that - I agree that if it going to move anything, like the nurse said, rubbing cream in, excercise would all do the same!!!
Thanks, wanted to ask the resident expert your views so thanks for them.