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Lymphodema after lymph node removal

Hi ladies

Just wondering if anyone else has developed Lymphodema. As I had a load of lymph nodes removed I keep getting a mildly swollen right leg. Onc says he thinks it's early/mild Lymphodema so is sending me to the specialist nurse but that won't be for a few weeks.

I've booked myself privately in with a Manual lymphatic drainage lady who is going to teach me some massage techniques but I wondered if anyone else has developed this problem. If so, did anything help to manage or get rid of the swelling?

Thanks

Em

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Emsy, my close friend OC person has this heavily. She has to wear a custom tailored compression garment from under her breasts to her ankles. It is made of heavy spandex material. She has to wear this 24/7. It is uncomfortable, but mandatory. She's especially miserable in the hot weather. This can be a serious chronic problem, but if caught early, with the proper therapy, can be managed. Get on this immediately. This fluid can build up quickly. By managing it pro actively you will preserve your quality of life. I also have slight lymphedema from mastectomy. If managed from the onset, you should be able to keep it from becoming more serious.

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Thanks. It is useful to know that it matters how quickly you start dealing with it.

Em

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Also Emsy, perhaps no one has told you this yet, but with lymphedema it is NOT a good idea to soak in your bath tub or a hot tub. That can actually CAUSE fluid to accumulate. No caregiver (US) informed me of this, so I soaked in the tub expecting to feel better, whilst unknowingly making it worse!

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Me.........I was diagnosed in March, I had surgery last Aug and 15 lymph nodes removed. I have moderate swelling in my left leg. I wear a compression stocking up to my thigh every day. I have been for drainage massage which is expensive so cant go regularly. I do find elevating my legs really helps, I have two blocks at the end of my bed and when I get up in the morning my leg is pretty normal. It swells as the day goes on depending on the weather, if its hot its worse and also if I am on my feet all day. Must admit to being lazy about doing massage myself, my last session with the lady I see really only made my leg feel better for 24 hours. I know it can get worse but at the moment I am managing it well with the stocking and rest. Its a pain though as it restricts your lifestyle, I miss wearing shorts, skirts/dresses...........I have found it quite depressing. Good luck. x

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Em, You need to jump on this right now, you mustn,t wait a few weeks to see a nurse that is ridiculous, it is a right B to get rid of if allowed to take hold. If you haven,t already, then type in lymphodema and YouTube into your search engine and heaps of videos, from how to dry brush, drain the lymph system etc will pop up. There is advice on diet, ( ie low salt is very important, as it causes tissue to retain fluid, dandelion coffee and diuretics or wee pills, also ginger is good etc ) there are videos from a lady called Mellissa which look good, especially the information on draining by self massaging. Just type in "" Healthy living , Mellissa, lymphoma. youtube ". Also, I didn,t know but the actress Kathy Bates is recovering from O.C as well as B.C and, having also had around 19 lymph nodes out also dealing with Lymphoma. She is a big advocate for early intervention with no delays for Lymphoma treatment, I had no idea it goes up in grades if left. One of Kathys interviews ( with her doctor) can be found by typing, " Kathy Bates, discussing lymphoma, on the Doctors". Excuse me, I do feel daft but I don,t know how to do links, so I just tell people what to type in the search!. The good news is, lots can be done if you catch it early. I was spluttering into my hot chocolate when I read the Doc said you had it mild and would be seeing the specialist nurse in a few weeks! .It maddens me that they would risk it getting worse, as if you don,t have enough on your plate!. Check out the youtube videos Em and stamp on the little blighter. Hope the weekend goes well for you. xxx

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Also the risk of cellulitis is higher I was told, so no going barefoot (which I used to love) and no scratching mossie bites etc. I have been given standby antihistamine and a course of antibiotics just incase anything happens when away from home to stamp on it straight away. I had cellulitis in the same leg in 2007, it was awful and painful and it could be partly causing this problem now so the lympho nurse said.

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That is what happened to me, fluid retention in the leg went to cellulitis, antibiotics didn,t work so I went on 6 wks intravenous antibiotics and it was pure hell. I was sleeping on the floor with my legs up against the wall in the end, it took months to get rid of, eventually did with wee tablets, elevated legs whenever possible and compression stocking but it should never have gone that far!. Another Dozy Doctor that thought it was mild and sent me home with a message to put my feet up!. There is no mild lymphoma, only lymphoma that needs getting rid of aggressively. x x

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Oh poor you Badger, I was on holiday in America when I got it, back in 2007. A plant scratched my ankle and within hours I was in hospital, nightmare. They said once you have had cellulitis you are more likely to develop lymphedema later on :( Its a real pain!

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Thanks so much for the tips. I went (privately) to see a lovely lady who is trained in Manual lymphatic drainage today, as I thought it best not to wait until 17 August which is the appointment that came through for the NHS lymphoma clinic. To be fair to my onc he obviously sent the referral for me straight away as it came through a few days ago.

The lady was lovely and even brought in a book so I could take photos of the self massage techniques and exercises. She used a fab machine as well as her hands and my leg looked much better afterwards. I'm popping back on Tuesday so she can fit me for some special tights. She said it would be a good idea to wear them on the flight for our holiday. They are a bit pricey but I think it will be worth it.

I've got antihistamines and bite treatments etc already to take on holiday and following your tips am going to book an appointment with the doc to get some antibiotics to take with me.

I've just bought a couple of long dresses too (one in oxfam!) so I won't look odd with different size legs! I too am going to miss wearing shorts ☹️ Also no barefoot too which is going to take some remembering. Oh the joys!

Em

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