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My Lymphoedema Training - Part 1

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Re: My Lymphoedema Training - Part 1

bump

 

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Re: My Lymphoedema Training - Part 1

 

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Re: My Lymphoedema Training - Part 1

Has anyone heard of drainage exercises vacant can be done at home? I saw them somewhere, referring to a clinic. But the simple ones could be done at home. It involves stoking the neck, then the underarm of the good side, and working across to the effected side . Apparently it encourages a new pathway to drain.....???
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Re: My Lymphoedema Training - Part 1

Brilliant article Fizbix! Really clear and easy to understand. i have Lymphoedema in my left arm and had it before any treatment started as the Cancer was already in the Lymph Nodes. The whole thing is a total pain but you learn to live with it. I have just been away for the first time since diagnosis, wore a new sleeve on the flight and my arm only swelled a little in the heat and is much better now. Good luck with it all everyone x

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Re: My Lymphoedema Training - Part 1

Not sure if you cited mosquito bites as a possible source. Out here they bite right through your clothes, vicious little b.......s!, so you have to wear something really thick and/or saturate yourself in high concentrations of DEET bug spray every time you set foot outdoors. I believe insect bites were the start of my current issues. :'(

As others have mentioned though, sometimes you do all you can (and should) but it develops anyway, and I wanted to say don't beat yourself up, I repeat DO NOT BEAT YOURSELF UP! It's not your fault if you get lymphedema, any more than it is your fault you got cancer in the first place, or if it returns. It is bloody, yes, but NOT YOUR FAULT!

I just get fed up with so many people telling us what to do all the time to somehow make the cancer go away or prevent a recurrence, .... or suggesting that anything has been directly caused by something we did or didn't do. We meet so many fit, vegetarian, non-smoking tee-totallers with no family history who STILL get cancer, or STILL get recurrences, that I feel much of what people try to tell us is so much ******!
(Not the advice on this thread, of course!)

*gets down from high horse*
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Re: My Lymphoedema Training - Part 1

bumping for littlemrs

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Re: My Lymphoedema Training - Part 1

good thread fiz thank you. And Hi Little H - good meet at the slug last month! x

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Re: My Lymphoedema Training - Part 1

Hi Jo & Kate,

Thanks so much for the advice & information,I appreciate it.

Little H x

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Re: My Lymphoedema Training - Part 1

Hi Little H

After reading your post yesterday I asked the nurses here if they had anything that may help you. Below is their reply. Hope it helps.

Jo, Facilitator

Hello little H,

The risk of developing lymphoedema is estimated to be less for people who have sentinel node biopsy of the armpit, as this is less traumatic to the lymph system. However, as sentinel node biopsy is a relatively new procedure it is still not clear how people's risk of lymphoedema will be affected by this procedure in the long term.

It is not yet known why some people develop this condition and others don't. The vast majority of people who develop lymphoedema after breast cancer and its treatment have only mild to moderate symptoms. It is only the arm, hand, fingers and breast on the affected side that become 'at risk'.

There is no fixed exercise regime you should follow but if you were given exercises to do after your operation, it is worth carrying on with these as gentle exercise is thought to help keep the lymph fluid moving. Other exercise such as walking or swimming can also be helpful. It is important to build up exercise gradually, avoid over-tiring your muscles and to stop if you notice any pain or swelling.

You might like to read more about this in Breast Cancer Care's booklet 'Reducing the risk of lymphoedema', please find direct link below:

http://www.breastcancercare.org.uk/upload/pdf/Web_Reducing_risk_lymphoedema.pdf

You might also like a copy of the exercise factsheet that Breast Cancer Care has produced for people who have had surgery. Please click on the link below to read this:

http://www.breastcancercare.org.uk/upload/pdf/bcc_exercises06_web_0.pdf

Kind regards,
Website Nurse

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Re: My Lymphoedema Training - Part 1

Hi Bahones

I have tried to pm you but an error keeps coming up. I would be very grateful if you could send me the computer desk exercises. I think you have my email address from when you sent me information previously.

Thanks again, your expertise and knowledge is a great help to many of us.

Anne xx

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Re: My Lymphoedema Training - Part 1

Thanks Bahons2,

I'll have a look at the exercises and mention it to my bcn when I next see her.

All the best,

Helen x

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Re: My Lymphoedema Training - Part 1

Hi

There are 3 threads on here - in the Lymphoedema Category - called 'My Lymphoedema Training'. There are parts 1, 2 and 3 - you've found number 1! - the beginning contains the exercises. I think quite a few people have found them helpful.

They are meant for when you have lymphoedema, but obviously wouldn't do any harm if you haven't.

If you like swimming and there's no medical reason why you shouldn't, this is really good for both lymphoedema and 'at risk' arms'. Best to start slowly and work up gradually; I think breast stroke is to be recommended, at least at first.

There are no exercises guaranteed to prevent lymphoedema, unfortunately - if only!!!. Luck, in terms of how robust your lymphatic system is, has a lot to do with it, as does the sort of treatment you've had (an axillary clearance plus radiotherapy is the most risky from a lymphoedema viewpoint). Being overweight or diabetic also increases the likelihood.

SNB does seem to be associated with a lower risk of lymphoedema, at least in the short term. It's still best to take all the usual precautions, tho'.

X

S

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Re: My Lymphoedema Training - Part 1

Hi All,

Just wondered if anyone can answer my question,I had a SNB in Feb,3 nodes removed,all clear,followed by chemo and my lumpectomy last Tuesday. I'm seeing the surgeon on Wed to have stitches removed and see if margins are clear.

What I want to know is should I be doing any exercises to help prevent lymphoedema,no-one has ever mentioned it to me but when I asked my oncologist if I was at risk she just said the risk was much less than someone who had had more lymph nodes removed.

Thanks for any advice,

Little H xx

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Re: My Lymphoedema Training - Part 1

Hi redand blue

I've never had full-blown breast 'oedema' (did your surgeon mean lymphoedema, do you think?); I've seen a picture of breast lymphoedema and the skin in that had the appearance of orange peel.

The description you have given of your breast is rather different. I'm only a fellow bc sufferer - no medical expert, but it does sound as though it's infected (is it hot to the touch?). Perhaps your GP and surgeon are both right and it's an infected oedema? Perhaps also you are a bit run-down and this is why it is taking ages to settle.

Sorry I can't be of more help - perhaps someone else will know more. I do hope that it improves and that you get some answers soon.

X

S

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Re: My Lymphoedema Training - Part 1

Hello I am from the UK and..I am new to this website and wanted to post this comment. I had DCIS high grade, and had surgery 2 months ago to remove it and the sentinel lymph node. I was supposed to start 15 days of high dose radiotherapy last week but it has been delayed as the surgeon said I had breast oedema and had to wait patiently for it to clear. It is red and blue in colour with a yellow liquid around the nipple. At first I was told it was an infection by my GP and after several visits and several different antibiotics nothing cleared and then I got back to the surgeon. He has rescheduled the radiotherapy for 2 weeks time but I cant see any improvement so I have my doubts as to whether I can proceed with this treatment plan. Can anyone help me understand why this happens and why it wont go away????

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Re: My Lymphoedema Training - Part 1

Oh Goodness no.My colleagues dont talk about my sleeve in 'that' way. They are all lovely and wouldnt dream of being so rude. They are just very curious -but they never seem to take it in when I tell them once again that no ,I havent hurt my hand/arm / wrist and the sleeve is not a splint. I work in a very big office so every day there are people who have just noticed my sleeve for the first time.

I never thought about lymph nodes in the arm itself.Another thing to worry about...

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Re: My Lymphoedema Training - Part 1

Hi all

Have finally managed to find the computer/desk exercises/stretches that I mentioned a few weeks ago.

I've scanned them in, so if anyone would like a copy, please let me know.

X

S

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Re: My Lymphoedema Training - Part 1

Bump for Irene

X

S

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Re: My Lymphoedema Training - Part 1

Hi Unafitz & everyone else

Still looking for the exercises!

I hear the vertical mice are good for tennis elbow.

I mouse most of the time with my right hand (least bad side) with buttons set for a left hander. Sounds weird (and took a bit of getting used to), but I also had terrible tennis elbow and reducing the amount of work my index finger had to do has made it so much better and not aggravated the lymphoedema in the process.

I think you're right; sitting with a bent elbow is not good. I'm pretty sure there are some lymph nodes on the inside of the arm that don't like being compressed at a pc.

I've also had blood blisters from the silicon band like you. They are awful aren't they? I think it was my own fault, as I tend to try to haul my sleeves too far up my arm. I now try to position them slightly further down. I've also got some Haddenham's Venex sleeves without silicon bands and try to alternate those with the banded ones.

If your sleeve is horribly tight, could it not be a good fit anymore?

Do your colleagues really sit and talk about your sleeve? Sounds rather rude of them.....

X to all

S

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Re: My Lymphoedema Training - Part 1

I work at a PC all day and have had Lymphodema for over 4 years. I only started this job after the Dx although it was very mild to start with.
Gradually and almost imperceptibly it has worsened until now I have to wear my sleeve all of the time .Before, I never wore it -or only after an event.Not recommended practice though.

I noticed at the end of last year that my arm had a tendency to ache and was swelling more than it used to do. I had a desk assessment and then an Occupational Health assessment. I had a visit from an assessor who made recommendations about a variety of equipment necessary for my various ailments.

I have a writing slope which slots over the keyboard-this has been a boon even though I thought I had no need for it. I also have a vertical mouse which is upright and has buttons arranged down one side rather than across the top. Im not so convinced about this though . In fact I have changed desks temporarily and am just now using a normal mouse and cant see what the difference is to be honest. I keep meaning to try using the mouse with my good hand as Im sure this would help.

Heat does have an affect on my arm though and the sleeve is so very uncomfortable and tight (Im wondering how this fits into the 'no tight clothing' regime)-especially around the crook of my arm. Also the silicon band has caused blood blisters. I was given some anti chafe gel at the clinic which does help.

I also would like to see some exercises to do at my desk. It would give my colleagues something else to talk about other than my sleeve...

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Re: My Lymphoedema Training - Part 1

Thanks for the advice Bahones - it never crossed my mind that I might have a problem sitting at pc when I get back to work. I'll discuss with my boss and ask for assessment. If you can lay hands on exercises that would be great.

Why doesn’t anyone at the bc clinic ask us about these things?

Anne xx

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Re: My Lymphoedema Training - Part 1

Hi there

Anne, working at a pc is not very good for 'at risk' and lymphoedema arms.

BUT....there are things you (and your employer) can do to help.

Regular breaks are really important (and for your eyes, too - everyone should have them)

Your arm, in particular the elbow should be well supported. There are specialist supports available (which clamp to the desk) if necessary.

Make absolutely sure that the screen and the desk are at the right height for YOU and that you have a good chair with effective back support. A footstool is a good idea, too.

An ergonomic mouse might be worth thinkning about. You use it with your palm at right angles to the desk - the buttons are one above the other, I think.

If you can learn to mouse (if you don't already) with your good arm, at least part of the time, that helps too.

Your employer might need to do a risk assessment for you - are you having a 'back-to-work' interview or something like that?

Somewhere, I think have buried some exercises to do at a computer/desk. I'll try to find them - wish me luck!

Twinny2, you might have a bit of truncal lymphoedema - can your bcn advise?

Jax, fancy 5 of you bobbing about in the dark - no wonder you were in stitches!!!! It's interesting that there is different thinking about compression garments here generally....in fact, I've noticed that they set less store by it, preferring lots of MLD to wall-to-wall sleeve wearing.

And snap, I'm usually pretty good about wearing mine, but special occasions are special occasions and it's good for morale to get shot of them once in a while, I feel.

And snap again, agree with you completely, any lymphoedema nurse/therapist ought to spend a week earing a heavy duty sleeve in a heatwave before they are regarded as qualified - good practical experience!

X to all

S

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Re: My Lymphoedema Training - Part 1

Hi all

Someone mentioned pc - is typing a problem? I return to work at the start of August and use a pc for hours at time. Help!

Anne x

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Re: My Lymphoedema Training - Part 1

Hi everyone

Humm very interesting. I have had 18 nodes removed last March and suffered from severe seroma following mx (5 months worth!) and other than a mere mention of ‘lymphoedema’ I had no idea what it was. I recently had a massage with a specialist cancer masseur and she explained the situation fuller. She adapted the massage and wouldn’t touch the quadrant on the affected side and recommended that when I have other massages I do the same (which I now do). Strangely enough even before this, I was already feeling something was not right with my affected armpit as sometimes it feels ‘full’ and other times not and I sometimes get a sensation of a ‘liquid surge’ under the arm…..do you think this could be it? And can it get worse, as it’s not particularly troublesome at the moment?

Perhaps I should mention it on my next check up visit....however I used to mention the ‘liquid surge’ sensation’ to my surgeon when I was suffering from seromas, who used to look at me like I was a crazed lunatic (although he is lovely, so I always forgive him!). Does anyone else get this…or is it only me?

Anyway thanks for the tips. Now I am armed with more information so I can take an active role in looking after my arm.

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Re: My Lymphoedema Training - Part 1

Thanks for all this. Thought I could abandon all ironing but am right handed and problems are on left side !!

Andie

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Re: My Lymphoedema Training - Part 1

Bump for AndieT

X

S

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Re: My Lymphoedema Training - Part 1

Bump for Neelie

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Re: My Lymphoedema Training - Part 1

Hi everyone

Pippa has mentioned MacMillan here and they do have a lot of information on their site which you may find helpful.

http://www.cancerbackup.org.uk/Resourcessupport/Symptomssideeffects/Lymphoedema/Organisationssupplie...

Best wishes

Ann

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Re: My Lymphoedema Training - Part 1

Thanks for the info fizbix. I'm going to print it off as I'm being asked to do a risk assessment for work relating to my arm/hand lymphoedema. I'm still confused as different therapists seem to say different things. I can understand about building up gradually as my lympho was triggered by swimming. Didn't do very much swimming but the therapist i saw said to treat at risk arm as if its a baby arm and develop it slowly. She also said she recommends doing exercises in the water not swimming for the first few sessions. Frustrating!
Thanks again
little mrs

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Re: My Lymphoedema Training - Part 1

Macmillan fund a lot of lymphoedema nurses and clinics inside hospitals, for cancer patients only; they used to provide sleeves, now they prescribe the size and level of compression, so that you can get them from your GP. I was prepared for a bit of a battle over it as a couple of years ago when I first had very minor lymphoedema, my then GP didn't know anything about it and said he would have been reluctant to prescribe something he didn't understand (!), but I think Macmillan distributed a lot of information to GPs when their system changed, and I have no problem at all having the prescription renewed.
BTW the sleeves make a huge difference, certainly if you have mild lymphoedema - I hate the way they look (and "you could get a nice crochet cardigan to cover it" ranks close to "you must stay positive" for well-meant irritants now) but they've made a big difference over the last couple of years. One thing, I had Mediven ones originally, but a new therapist changed them to Sigvaris, which were very much more comfortable.

One other bit of advice they emphasise a lot at my local clinic is to keep your arm well moisturised, so that the skin doesn't dry out and develop microcracks which allow infection in.

Pippa

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Re: My Lymphoedema Training - Part 1

That's really good news, Pauline, especially as you will be taking a long haul flight, the riskiest. Well done for persevering. Are you going somewhere warm and sunny?

It's shame they're not keener want to give people sleeves to prevent a possible lymphoedema. Much cheaper in the long term than having someone with full-blown lymphoedema on their books, I would have thought.

X

S

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Re: My Lymphoedema Training - Part 1

Thanks all this is good for me as I'm planning a long haul flight in December. I spoke to the BCN this afternoon and she obviously didn't want to give me an appointment for a compression sleeve unless 'I was really worried' about it. So I had to stand my ground and say that I would REALLY like one and that I wanted to reduce my risk of lymphoedema. She gave in without a flight but they obviously don't want to give one to everyone who has had their lymph nodes removed.

Pauline

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Re: My Lymphoedema Training - Part 1

Bump for Flygirl

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Re: My Lymphoedema Training - Part 1

thanks FB
this is wonderful

going off to read the remainder

hugs
Em
xx

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Re: My Lymphoedema Training - Part 1

FWIW, I was told that the heavy lifting/carrying was more to prevent you carrying stuff like heavy shopping bags (or the coal bucket!) - you tend to carry stuff like that on a narrow strap across your fingers/palm, or on a shoulder strap, and the pressure on such a narrow area isn't good.

Lyn

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Re: My Lymphoedema Training - Part 1

just upated hair removal and massage ..... cheers FB xxx

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Re: My Lymphoedema Training - Part 1

You see some good can come from bad, no ironing! Plus my LO nurse said no heavy carrying i.e. coal bucket! Great. OH usually does it but has to be reminded alot, still it's a job I hate and he doesn't do much else around the house!

Irene

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Re: My Lymphoedema Training - Part 1

Thanks. I will ask for a sleeve when I see the onc and bcn next week.

I'd love to go swimming, but I have a PICC line in my arm which I can't get wet, so that's not possible until after chemo. We used to go every Saturday as a family and I miss it.

Hope you're having a good day

Kinden
x

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Re: My Lymphoedema Training - Part 1

Hi Kinden

Lifting children is a tricky one, isn't it? Sounds as tho' you are doing a good thing by just lifting them onto your lap.

The only thing I can add to others' suggestions is to try to obtain a sleeve for prophylactic use - and wear it when you are at your busiest with your children - much the same idea as wearing one as a preventative when flying. Trouble is, you are unlikely to be prescribed one by the NHS unless you present with symptoms of lymphoedema (the words 'horse', 'stable door' and 'bolted' come to mind here). You might however be able to get one thro' a visit to a private lymphoedema specialist, if your budget runs to that.

Other than that, you could treat your arm as tho it already HAS lymphoedema ie, following Fizbix's excellent exercises and massage descriptions, supporting your arm (especially the elbow) on a cushion or similar when sitting down, not sleeping on that side at night, etc. If you like swimming, it's worth doing more of it as it is very good for lymph drainage.

I'm sure there's stuff I've missed out! Anyone else got any suggestions?

X

S

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Re: My Lymphoedema Training - Part 1

Thanks girls. I have been lifting my girls on to my lap but not carrying them around, and this seems to be working ok, so I'll carry on doing it.
FizBix - look forward to episode 2.

Kinden
x

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Re: My Lymphoedema Training - Part 1

Hi Kinden,
I had 8 nodes removed and work in a nursery class.
Initially I was told by the bcn that my arm would never be normal again and I would not be able to lift heavy weights.
However when saw a physio, due to cording, she said although I ought to take greater care of the arm in the way FB suggests there was no reason why I shouldn't use it in the way I had before. Just build up to it gradually and I should be able to pick up children / bikes at school but just don't overdo it or perform repetitive tasks.
Part of the exercises she gave me involved using wieghts to build up the muscle again.
So I do lift children and then carry them on my hip but do try to vary sides.
I don't have lyphoedema and certainly want to avoid it if possible and so i have found FB's posting and tips really useful. I was already following most but some are new so THANK YOU
M x

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Re: My Lymphoedema Training - Part 1

Hi Kinden

The children is a difficult one isn't it ? I wuld guess that would be too heavy - but what can you do ? Also, if you do it too one-sided then you will put your back out. Perhaps somoene else can help.

Sorry - don;t know wbout the seocnd question but Bharons2 knows all about lymphoedema so homefully she can help - or someone else .....

good luck with it all
love FB xx

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Re: My Lymphoedema Training - Part 1

Hi Fizbix,

This is really good, thanks.

I'm a bit confused by what is meant by heavy though? I am supposed to lift my children (4 and 2, both well within the normal weight ranges for their ages) or not?

I have 7 nodes removed and 5 were infected, so obviously I am worried that there are more. I've seen that loads of ladies on here have gone on to have the rest removed/clearance but only radiotherapy to the area (after I've finished the chemo) is recommended for me. Think I'll ask the onc about this when I see him next week, but wondered whether your classes had covered anything on which method carries least risk of lymphodema?

Thanks
Kinden
x

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Re: My Lymphoedema Training - Part 1

Hi FizBix,

thanks for the tips. Its the bloody ironing that did it for me a few weeks ago. Have got an appointment with the clinic on the 10th to discuss lymphodema. A bit of a long wait.

sukes

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Re: My Lymphoedema Training - Part 1

Bahons, no, I get no treatment. I need to phone the nurse anyway so I'll do that and ask about any treatment going. Thanks for the encouragement.

Good luck to us all.
xx

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Re: My Lymphoedema Training - Part 1

Hi All

The flying...yes, the ideal scenario is to be fitted for a sleeve BEFORE you get any problems and then wear it when the lymphatic system is under additional load - ie flying, exercising, shopping, ironing hoovering, using a PC, thus giving the lymphatics the support they need when they need it most and avoiding lymphoedema in the first place! I understand this is the way they are going in the States, ie identifying the triggers and recommending a sleeve is worn at those times.

By the way, Fizbix, you can still sign the petition if you live abroad - you just need to check the 'expat box'. The important thing is that you are British citizen;doesn't matter where you are in the world.

Maureen - do you get any treatment from your lymphoedema clinic - manual lymphatic drainage, compression bandaging, kinesio taping to help you? At 28%, your arm sounds as tho' it needs a bit more help than just exercises.

X to all

S

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Re: My Lymphoedema Training - Part 1

Thanks for that, FB. Some very helpful info there. Can't wait for the rest of it.

We flew long-haul last Oct. Prior to that I hadn't been able to wear the compression sleeve because I was awaiting surgery to have a pin inserted in the bad arm and both me and the medical people were concerned that the bone may fracture with the pressure of putting the sleeve on. I also had extensive radiotherapy to both sides, and length of, the humerus. However, I was strongly advised to wear the sleeve for the flight, which I did. I suppose with all that going on, it's no wonder I'm now 28% lympho in that arm.

I do the exercises but not every day, but find my arm aches quite a bit after I've done them.

Good luck to us all.
Maureen xx

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Re: My Lymphoedema Training - Part 1

Just been diagnosed and awaiting my appointment with breast care nurses so this is so so useful thank you.

Regards Judy

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Re: My Lymphoedema Training - Part 1

I, too, wonder about the 1% figure - I did everything I could to prevent it, exercised everyday, read all the advice I could find, scoured the internet, and I still have it.

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Re: My Lymphoedema Training - Part 1

Thanks S

good of you to share all your practical experince - sounds like a b/dy nightmare for you - very sorry to hear tha despite all your efforts you got it in the other one - what a b*mmer

i was worried about puting the quoted figure on ... even if 1% is unacheiveable ... if it was 10% it would still be worth doing don't you think? I know that at this clinic they have over 300 people and they are making sure that we all get 6 month referesher courses and then yearly.

very useful about the flying .... so you are saying that we should all have a compression sleeve before flying ? I'll have to see how I can get one of those ... as you say I have the "planned trip" at the end of this. Thanks for that.

good luck with the petition - I haven't signed it as i don;t live in the UK anymore and didn't want to muck it up for you - but I think it's a very good thing to do

keep going
love FB xxxxxxxxxxx