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Lymphodoema
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Message 1.Â
Posted by Binky (U4657795) on Tuesday, 23rd August 2011
Does anyone else here have experience of this?
I have it in my arm after the removal of lymph nodes. It is painful and getting more noticeable. I'm seeing a specialist nurse later in the week and wondered if anyone had advice to give in the meantime. -
Message 2
Posted by matilda groves (U1636558) on Tuesday, 23rd August 2011
Hi Binky
Haven't been in ML for ages, but just looked this morning and saw this, spooky
I have lymphoedema due to removal of lymph nodes, and it is playing up at the moment, according to the nurse there is a lot of it about this year.
General advice I was given was
Move the arm about, it helps the fluid move up the arm
Gently stroke upwards on your arm towards back of shoulder to help move fluid, nurse will probably show you what I mean
Sit with your arm up above your shoulder when you can
Do not lift anything heavy with that arm
Avoid getting any scratches bites etc on that arm, as that can cause infection
Moisturise the skin often
They may give you a compresion sleeve to wear, this helps move the fluid up the arm, and some exercises as well.
Hope that helps, good luck with the nurse
matty
Other than that -
Message 3
Posted by Binky (U4657795) on Tuesday, 23rd August 2011
Hi matty,
Long time no speak, as it were.
After we met at the York meet, and I was getting over cancer no.1 (lymphoma) I was diagnosed with cancer no.2 (breast). Lymph nodes removed and you've been through it yourself so you know the problems.
What i want to know is does it go away (with help from nurse of course) or are we stuck with it once it shows up? It's almost a year since my surgery and I thought I was safe to go back to 'normal' things by now. -
Message 4
Posted by matilda groves (U1636558) on Tuesday, 23rd August 2011
Unfortunately I don't think you are ever rid of it, but hopefully it can be got down to a size where it is not a problem.
They assess it by measuring the volume of each arm. When I first went bad arm was 12% bigger than good arm. By wearing the compression sleeve all the time, bad arm was down to 2% bigger, which is fine and meant not having to wear sleeve all the time, I just wore it around the house.
Unfortunatley something set it off again, and bad arm went up to 22%, so have now got stronger compression, and hoping it works.
Sorry not to be more encouraging. Oh final thing, watch out when you are driving long distances, because that involves keeping your arm still in one position more or less, which is not a good thing. I can't of course advocate taking your hand off the wheel to do a quick exercise every so often
cheers
matty -
Message 5
Posted by Glorybal-MUSTARDLAND FOREVER (U7278111) on Tuesday, 23rd August 2011
barefoot choirmistress - who posts in the Earlybirds thread - has experience of this condition. I'll pop over and tell her about this thread.
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Message 6
Posted by Barefoot - a Bit of a Handful (U14258080) on Tuesday, 23rd August 2011
Hi
I developed lymphoeima in my left leg at the beginning of the ear, following a bout of cellulitis. The leg was like a treetrunk and although the cellulitis had gone the swelling remained. I had some light support stockings prescribed - 2 pairs, one a size larger than the other so wore larger one on left leg and smaller on right.
My GP then referred me to a local lymphoedima clinic, run by a hospice (!). This had started as a means of helping people with L following breast cancer treatment; it was then extended to all cancer patients and more recently to all L sufferers. It's run as a charity but the therapists can prescribe on the NHS.
Saw the therapist for an initial assessment, She measured the leg at various points along it and also the good leg, as benchmark/comparison. She also prescribed much stronger support hose and an aqueous cream for the legs - in fact both as the other had a bad attack of keratosis.
She also showed me a very simple massage and I will try to explain. Press three fingers on one hand into the opposite forearm, mover the fingers forward and sideways, then release the pressure. Your fingers will return to the original position. Using this technique I massage:
at the side of the neck - forward and down (
at the bottom of the neck - same motion
in the hollows in the collar bone (cross hands for this) outward and upward
all the above 5 times
then with a whole hand, under the armpit about a half hand distance down - towards the back and up - 15 times.
Then stroke your side with the hand 5 times:
above the waist to armpit
below the waste to armpit
from groin up to armpit - both hands
and from thigh to armpit
I did this twice a day and within a month the swelling was almost gone. I have a check up due in September. I went back shortly after the first appointment to have the hose fitted and check the massage was OK.
The keratoris is much improved on both legs as well.
Frankly I did not believe in all this but it's worked. The idea is to get the fluid moving upwards, above the waist, so it can then drain down into the bladder. So you clear the neck areas first so there's room for the fluid to go. Important that the stroking comes well up the body, to get over the watershed.
If I can find some links I will put them in.
bc -
Message 7
Posted by Barefoot - a Bit of a Handful (U14258080) on Tuesday, 23rd August 2011
this is a good site and you would be advised to follow these instructions in case I haven't got it quite right.
bc -
Message 8
Posted by Binky (U4657795) on Tuesday, 23rd August 2011
That looks the sort of thing I'm looking for. Maybe the lymphodoema nurse will show me something like that too, so I know that I'm doing the right movements. I fear making things worse whenever I undertake DIY treatments.
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Message 9
Posted by matilda groves (U1636558) on Tuesday, 23rd August 2011
Binky
I would think she would, mine showed me how to do this, and the stroking up the arm, and some execises pretty similar to the post-op ones to get arm going again
cheers
matty -
Message 10
Posted by Barefoot - a Bit of a Handful (U14258080) on Tuesday, 23rd August 2011
I think the key is to start with the neck so that's clear. There's no point imn massaging the arm/lg unless te fluid has somewhere to go to. It's like clearing a traffic jam - however much the cars behind bunch up, nothing moves until the first ones go.
bc -
Message 11
Posted by Binky (U4657795) on Tuesday, 23rd August 2011
I know that you should have a compression sleeve professionally fitted, but are those compression bandages from the chemist any good as a short term emergency measure?
I notice that the compression flight socks are no longer on sale, so maybe they do more harm than good. -
Message 12
Posted by matilda groves (U1636558) on Tuesday, 23rd August 2011
I would say no Binky
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Message 13
Posted by matilda groves (U1636558) on Tuesday, 23rd August 2011
oops sorry, pressed post message by mistake.
I would wait till Thurs, at my clinic anyway they have a stock in to fit you with, better to wait till then -
Message 14
Posted by Binky (U4657795) on Tuesday, 23rd August 2011
matty, one of the many difficulties I have is that all my treatment is private, not NHS. The clinic will not have a stock I am pretty sure.
I wish I'd known before I started that much of the follow up treatment, which you so badly need, is not covered (so no wig, compression garments, breast care nurse etc. for me). I rely on talking to MacMillan nurses and a kind lady at AXA Healthcare who steers me around what I can and can't have. -
Message 15
Posted by Retired-Rural-Person (U8479978) on Tuesday, 23rd August 2011
Dear Binky,
Seeing the lymphoedema nurse is the priority, but there is a lot of discussion of lymphoedema and different provision of it on the Breast Cancer Care boards at www.breastcancercare.org.uk that you might find helpful.
I have a feeling I have seen discussion there of what you can have if treated privately as well, and the general consensus was more than some people had been told. Will have a search around for you.
On further thought, if it is painful, should you be seeing GP in the mean time for exclusion of infection/cellulitis needing antibiotics? even urgently/out of hours, if you are feeling unwell with it?
Best wishes -
Message 16
Posted by Retired-Rural-Person (U8479978) on Tuesday, 23rd August 2011
Had typed half a message then lost it, hope it doesn't appear as gobbledygook.
I searched the other site but the only discussions of private versus NHS treatment seemed to be a bit out of date-2007/8.
It might be worth phoning their helpline as they are very good and supportive to ask about this? -
Message 17
Posted by matilda groves (U1636558) on Tuesday, 23rd August 2011
oh binky, that can cause problems I know. But even so, a prescription sleeve shouldn't take long for the pharmacist to get. Are you taking antibiotics if it's painful? Advice to me was strong ones and 2 weeks worth to really get at it
Push for 2 sleeves, because they rely on elasticity to work, so should be hand washed every day to refresh it. Having 2 stops you having to wash it before you go to bed every night.
Good luck,
matty -
Message 18
Posted by Binky (U4657795) on Wednesday, 24th August 2011
RRP, I don't think it's an infection.
By coincidence, I saw a hand surgeon last week (to follow up on a dupuytrens contracture op). I complained about the stiffness and swelling as I thought it might be connected to the operation rather than the BC/lymph node removal, but he confirmed that the swelling was lymphoedema. -
Message 19
Posted by Retired-Rural-Person (U8479978) on Wednesday, 24th August 2011
Binky, thank you for letting me know, it just suddenly occurred to me. Reading BCC this morning, there are a lot of comments about lymphoedema and how it hurts is mentioned a lot. They also talked about whether or not our arms are measured pre surgery, which one can see would help re diagnosis. I certainly wasn't measured.
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Message 20
Posted by Binky (U4657795) on Wednesday, 24th August 2011
Nor was I.
Nice surgeon said that as I was only having the sentinel node removed, it was unlikely that any problems would arise. Wrong!
As mentioned, it's my appointment tomorrow and I rang his secretary this afternoon to chivvy up the referral letter. She said he did it at 11pm last night. Serves him right. -
Message 21
Posted by Binky (U4657795) on Thursday, 25th August 2011
Trotted along this morning for an hour with the lymphodoema lady. She said it was a mild case (thank goodness) and can be overcome with exercise and using a compression sleeve. I got a prescription for 2 of these which is a big surprise to me as I expected to have to pay.
She also did a complete body manual drainage and showed OH some basic methods for him to try on me at home.
It was a very reassuring and relaxing experience in all. -
Message 22
Posted by Retired-Rural-Person (U8479978) on Thursday, 25th August 2011
That is good news, Binky.
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Message 23
Posted by dilly_p (U7128305) on Sunday, 28th August 2011
Hi Binky
I just have a couple of points to add, as Matty, Barefoot Choirmistress and Retired Rural Person (as well as your own specialist nurse) have given you a comprehensive answer to your original question, 1) the lymphodoema comes and goes but I have found that, if I start wearing my compression sleeve as soon as I notice my arm increasing in size (and I check it often) the LD goes quite quickly. So the longer I leave it, the longer I have to wear the blasted sleeve, 2) Compression sleeves also come in black, which is a bit smarter than the funny "surgical fawn" version, so if you wear quite a lot of black, especially in winter, it's worth asking your nurse to order some for you. You'll probably need more sleeves anyway as they tend to lose elasticity over time. Hope that helps.
Good luck!
Dilly -
Message 24
Posted by Betsi clwc clwc (U11288289) on Sunday, 28th August 2011
Just picked up on this and have nothing to add apart from keep smiling Binky and with your OH 's backing I'm sure you will come out the other side smiling. Take care x
Looking forward to meeting you again on another Essex Meet.
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