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Joining the LD gang

20 REPLIES 20
Member

Re: Joining the LD gang

Have PM'd u Starfish xx

Member

Re: Joining the LD gang

Not sure if this has already been mentioned but may I suggest that anyone with lymphoedema joins the Lymphodema support network. If you contact me I can give you the contact details. As well as all the really useful up to date leaflets you will receive regular newsletters, an excellent DVD demonstrating exercises and SLD together with soft balls which can be used to exercise the hand. All of us with this side effect of our treatment should support this worthwhile organisation.

I was dx with lymphoedema in Dec 08 before my rads. Incidentally under no circumstances should any massage be undertaken until treatment is over. This is because there is a risk that massage can spread any cancer cells to the rest of the body.

Sadly my lymphoedema has got worse considerably worse since Dec 08 mainly due to not wearing sleeve, being overweight and patchy support. I am now undergoing a month of bandaging and MLD.

Please feel free to contact me for any info or advice.

Starfish

Member

Re: Joining the LD gang

sunshine, sorry none of us got back to you about this - maybe it was the idea of running when you don't have to that stunned us all into silence!!
the general idea is that exercise (& keeping your bmi nice & low) is good
wear your glove - maybe check with your ld nurse if it's the best one for jogging - & try to keep your wrist up reasonably high
good luck with training, let us know how you get on

Member

Re: Joining the LD gang

It's me with my first question, I am sure there will be many more!!!
My daughter wants me to do the race for life with her this year (I have only ever run to catch a bus) I know that swimming and yoga is advised for lymphoedema but not sure about jogging. Can anyone advise?

Thanks

Member

Re: Joining the LD gang

hello and welcome ! ;ive had lymphodemia for 4 yrs now and wear a sleeve and a compression bra type thingy ,im due to have mld in the next few weeks this will be my 3rd time and i must say it does really work .as for the sleeves they are a horrid colour arnt they! ive brought some fabric pens and drawn flowers etc on mine and it does look quite nice .also in claires accessories they have a net sleeve thingy that goes over my sleeve and they come in differant clours too .it aint all bad and here you will get lots of support and advice .xx

Member

Re: Joining the LD gang

hi sunshine 1
welcome, welcome
sorry you've joined us but glad you got 'caught' early - hopefully they'll get on top of it really quickly
sounds lie you're getting excellent info & support - do come to the gang for a good old moan (or to share any triumphs) though

Member

Re: Joining the LD gang

Well here I am and can I join your gang please, not that I really want to. Saw specialist LN this morning and it has been confirmed I have it in my wrist, only very slightly but it is there. I have been given a fingerless glove to wear during the day and another for nightime. How attractive they are. I did ask if I could sew some sequins and fancy stones on it. The LN is hopeful that as we have caught it early, with the glove and drainage massage I might only need if for 3 months. Good news is no more stretching up high for long periods which means no more pruning hedges and cleaning windows.

Member

Re: Joining the LD gang

It sounds more like cording and it's a real pain. Lymphoedema will make it leave a visible dent if you press a few seconds where the swelling is, cording doesn't do that. I got an area of swelling just above my elbow on the inside surface, it was "downstream" of where the cording had previously been. I think it depends which part of the axilla has been damaged. Gentle massage will help which ever it is, and do keep up with the post op exercises. See the BCN when you can. I hope you get some relief soon.

Member

Re: Joining the LD gang

Can anyone tell me if I might have lymphoedema in my wrist. I had axillary clearance 9 weeks ago and I have been left with cording although it seems to be settling down a bit now. The thing is my wrist on the underside has become really sore and slightly swollen and hurts if I move it up or down, the rest of my arm looks normal. Could this be lymphoedema or the affects of the cording? Any help would be appreciated.

Member

Re: Joining the LD gang

Hi Rozita,
I hope you get the further treatment you need soon. I`m in the USA, but I`m British, here temporarily, and have been having intensive MLD each morning for breast lymphoedema. Two things I`ve learned which may be of use. My therapists have got me to wear sports bras (cheapies) at the moment because they provide some compression and also dont dig in at the band to allow the lymph to flow.
Also, apparently the thing which can move lymph, which as you know has no pump, is deep breathing.

http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Symptomssideeffects/Lymphoede...

Theres a lot of evidence to support the idea that deep breathing from the diaphragm moves the lymph. I`ve been trying it for this past week, but as a long term thing it may make a difference!
I hope your problems are dealt with soon,
Mimsy

Member

Re: Joining the LD gang

Hi Rozita

Not sure if this of any help but I have mild LD in my breast and in my arm. I do SLD daily and have MLD once a month. I wear a sleeve and it has not been mentioned that I shouldn't wear it because of my breast.

Hopefully by now your LD contact has been in touch and I would very much like to know her answer.

Take Care

Andie

Member

Re: Joining the LD gang

Wonder if I can ask a few questions iv had lymphodemia in my breast for a few months but my local hospital just did six weeks of massage once a week which has now finished n I just go once another but my arm has gradually been swelling. N today it's really uncomfortable n very swollen not sure wat I shud do hav rang and left a message iv got a sleeve but didn't use it cos of th breast. Any advice ??? Cxx rozita

Member

Re: Joining the LD gang

Well, I`ve now had three weeks of MLD and what feels like daily pumelling. The therapist has tried to move the lymph in my left breast and soften up the scar tissue with some results. I`ve also learnt that deep breathing does wonders for moving lymph around above anything else, so am trying to have a session of that every day,
Mimsy

Member

Re: Joining the LD gang

Thanks hjv. Since I`ve spent six days now having lymphodema massage, I feel like a fully paid up member.
As I`ve probably mentioned I`m getting my treatment in the States, where I`m living at the moment. I`m moving back next year and want to know what the provision is like for lymphodema treatment in the UK, or does it just depend on where you live?

Member

Re: Joining the LD gang

'bumping for u mimsy.

Member

Re: Joining the LD gang

Hi, I want to join the gang. I had a WLE, chemo and rads two years ago. My affected breast has gradually gone red and swollen, but recently I went to the radiation oncologist and he said it was lymphoedema. I`d forgotten about our old friend, and hadnt expected it to show up in my breast, as I`d had it in my arm previously.
Anyhow I`m booked in for MLD. I`m living in the States at present and they`re quite efficient about all this. I`m wondering if its been slowly developing for a long time but I`ve only just noticed.Also wondering if I`ve got it anywhere else on my left side as I feel a bit lumpy.
Any thoughts, anybody?
Mims

Member

Re: Joining the LD gang

thanks Norberte, she was quite a nice nurse actually,lol. Think she must have just forgotten to tell me why. It does sound intense but at last hopefully it'll eventually keep things at bay a bit. I've only had 2nd chemo & rads to come so it's gonna be about feb/march before treatment is finished. Seems like an age away,lol x

Member

Re: Joining the LD gang

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Member

Re: Joining the LD gang

ah that makes sense, thanks Manny, The nurse didnt really elaborate why just said it's what they do. But i can see now there are real reasons behind it which i hadn't thought about. I'll start wearing the glove & sleeve as soon as i get them which i think is in about a week & am doing the exercises & skin care, thanks so much for the reply x

Member

Re: Joining the LD gang

I saw the LD nurse after rads finished, and I had chemo pre-surgery, so no real help.

But it does sound about right really as you wouldn't want to do SLD when on rads as you need to watch the skin and not mess about with it, and I guess they want you to finish chemo first as the LD massage moves lymph about and can theoretically move cancer cells. Which the chemo is there for - so I think they want you to kill any rogue cells before starting to stimulate the lymphatic system.

You can start skin care and the excersises though - that that may help improve things anyway - and using the glove of course.

Member

Joining the LD gang

Hi all, well, im now having to join the LD gang. i have developed mild lymphodema in my hand & wrist & my lymphoedema nurse says it's thanks to an insect bite on my wrist, why couldn't it have chosen the other damn arm! Anyway she's ordered me a glove & sleeve in some kind of fetching (not) american tan type colour. Why can't they make them a bit nicer. As im still undergoing chemo then rads after she said she would show me the MLD when all my treatment is finished. Is this normal procedure as i was thinking that surely it would help me to start doing it now, but of course with my chemo brain i forgot to ask. What have others done? thanks x