Lymphedema

[Be-Positive]

Hi all,

Mum has swollen leg & foot and they've said its lymphedema & once you get it you can't get rid of it. Has anyone else had this and if you have what have you done to manage your symptoms?! I'm going to buy her a Pneumatic compression device as read they can help. Also I think you can have special massages to help the fluid disburse. Any recommendations or tips would be useful. I think mum is pretty down in the dumps about it as she didn't realise it was something that she now has to live with, mum has been doing so well lately and she is getting her life back again, however her leg and foot being swollen is affecting clothes and shoes fitting. Our CNS nurse can be so blunt sometimes as she didn't exactly say don't worry we can get rid of symptoms or anything she just focused on the fact you can't cure it! Thanks all X

[Katmal-UK]

Hi. Sometimes when I reply I think people will think my god not that woman again with something else shes had experience of but I have lymphedema in both legs and ankles or should that read cankles! I have been offered to be referred for 'treatment' but Ive learnt to live with it. Obviously it gets worse as the day goes on and can make my ankles feel tight . I dont wear skirts at all now. id recommend your mum asks to be referred for the massages as I believe they help, for me I dont bother because of time restrictions with working full time. Please let us know how the compression device works, id be interested to know. wishing your mum well. Kathy xx

[Be-Positive in reply to Katmal-UK]

Hi Katmal, it's nice hearing someone who has experienced it and coping fine like you sound you are!

Yes mum was laughing yesterday at one point saying great I have to get used to my fat foot now. They have ordered mum some stockings for her to wear which is supposed to help with the fluid disburse. I'll keep you posted with anything we can find that helps.

The CNS also stressed how we have to look out for infection and she should shave her legs, it was all pretty negative but I don't think she means to be. Mum can't not shave her legs she is a right glamourpuss and has dark hair so wouldn't look too great haha. Xx

[Katmal-UK in reply to Be-Positive]

Lol I've never heard of being told to shave yr legs, not sure how that would help but like yr mum I dont walk round with hairy legs either! Sometimes the advice is negative, ive learnt over the last nine years to ignore negative people lol. Hopefully yr mum will learn to cope ok xx

[sarah48 in reply to Katmal-UK]

Hi Kathy,

Even when working full-time you could manage to fit in the max 10 minutes per day for your own lymphatic drainage massage and special exercises. I went to a clinic specialising in the Vodder method of lymphatic drainage in Norwich (I don't know where you live but I am sure you could find somewhere near you). I do also go once a fortnight for a 45 minute session there but your own daily 10 minute routine at home would be better than nothing. I also wear the Sigvaris (available free on prescription for cancer patients) compression stockings, if I am walking for more than an hour, which I actually think are quite attractive with their lacy tops.

I was told that you are better just to have your feet up in the evenings rather than use a compression device, but my lymphodema is only 5% in one leg so maybe that makes a difference.

I was also advised to cut down/out caffeine and alcohol so I just have one normal tea in the mornings and one spritzer/prosecco (lower alcohol) when I drink. They also advise having warm water with juice of half a lemon first thing in the morning (I add fresh grated ginger too as that's anti-inflammatory which as you know is good for prevening recurrence), usually add a teaspoon of honey too.

Best wishes - have loved reading all your posts since my diagnosis last year - so please never worry about posting on lots of different subjects or I would miss you!

Sarah

[Katmal-UK in reply to sarah48]

Hi Sarah. Im going to look up the Vodder method! Ive had difficulty getting time off work to attend any appointments for my trial so to get time off for a lymphadema clinic would be impossible lol so I tend to just put my feet up in the evenings and weekends which helps . I dont drink so that isnt an issue but I do like my cup of tea . To be honest after 9 years its my new normal so Ive just learnt to live with it lol. Hope you are doing ok . Kathy xx

[sarah48 in reply to Katmal-UK]

Hi Kathy,

It's great that at least you get your feet up when you relax. Try to get them up higher than your heart - I just use cushions.

Have a look at pollynoble.com (how I healed my lymphedema). I asked my Vodder MLD therapist to check this out and she reckons that all 10 things except the coffee enemas are worth trying. I do them all to an extent which suits me as and when (after all we've been through I'm a great believer in "a little of what you fancy does you good") and have seen a nutritionist who has prescribed me some supplements to help build up after chemo and to help with the symptoms of menopause, which I wish I'd addressed years ago! However, I don't juice, just eat lots of fruit and veggies and agree with the opinion that smoothies are better with all the fibre in, and I just make smoothies when two or more of us in the family fancy it. I'd like to look more into the visualisation as that sounds fascinating to me.

I'm doing very well thank you. Last summer, after a 9 hour op. - including a stoma (possibility of reversal after 2 years, but it's an end colostomy so a more complicated op.) and removal of many tricky para-aortic lymph nodes - fabulous surgeon - on my husband's 60th birthday - family party postponed to this year! I could hardly walk and lost one and a half stone. Our life was on hold, so this summer we have been making up for things big time! I finished chemo, Carboplatin and Paclitaxol on 1 December. CA125 13 after 2 chemos, down from about 1100 at diagnosis. NED following CT early Feb, CA125 7.9 in April, 8.3 in July, but not concerned as 9 years ago after chemo for breast cancer it was 9 so feel that is my norm. I question now why they didn't given me an annual CA125 given the link between breast and ovarian cancer I have discovered since my ovarian diagnosis, but I suppose that's another story and won't change things.

Best wishes for your research re. Vodder.

Sarah x

[HopeP]

I have Lymphodema in both legs. One worse than the other. In the winter I wear compression stockings but I have relapsed this summer as its too hot to wear them! I've seen a lymphatic drainage masseuse but I found she made things worse rather than better. I am now going to try a rebounder as I've been told that can help. My legs are also a lot worse in the evening, especially if I haven't been able to sit with my feet up at all during the day. It is very frustrating!! Never heard of a pneumatic compression device, what is that????

Good luck to your mum xxxx

[Be-Positive in reply to HopeP]

I read about pneumatic compression devices on this website;

medicinenet.com/lymphedema/...

They have them on sale for around £50-100

quirumed.com/en/pressothera...

They are supposed to help disburse the fluid by massaging and pulsating the fluid. Hmm I will maybe get one for mum and let you know how it goes.

Thanks for letting me know your experience, mum's is currently in 1 leg and pretty swollen.

[Tesla_7US]

Be-Positive, I have mild Lymphedema from breast cancer/mastectomy 10 years ago. The important thing is that you cannot go into hot tubs or soak in a hot bath any longer as it will make it worse!!! For me, that was the hardest part as I love to read whilst soaking in a hot bath. When massaging the affected areas always rub towards your heart. This is what I was taught when getting physio therapy. The Compression garment can actually be made to measure for your mother, so it fits properly. Compression sleeves/stockings/garments will help stop MORE fluid from accumulating in the area. Also, tell yer mum to NOT cross her legs while sitting, that would only make more fluid accumulate. Leg crossing also raises your blood pressure. Best to both of you, Tesla

[Hidden]

My doctor referred me to a lymphedma specialist where I have been given made to measure compression. I went yesterday and the volume of my thigh has gone down 43%.

There is an excellent site called Lymphedema uk that has loads of practical advice

[Toguan]

Check Medweb. Com.

[Rlenesue]

I have had lymphedema in my right arm since 2007 after the removal of 8 lymph nodes during my radical mastectomies. There is no cure and yes, she will have it for the rest of her life. However there are things that can be done to minimize the swelling. I had a therapist who dealt with this and showed me how to wrap my arm with gauze, thick cotton over the gauze where there are joints, then a sleeve, then many compression bandages to wrap around that. My first visit I had to keep these bandages on for 3 days. When she took them off my arm felt lighter, the swelling went down and I felt better.she then did the massages where the lymph nodes are and showed me how to do yourself. I now rarely use that whole bandage procesnow but I do use a compression sleeve on a regular basis. I get my supplies through lymphedema products and they have helped. Perhaps you can get referred to a specialized doctor or therapist for this condition. Your mum will feel better. So far it seems you're doing everything right and being there for mum is half the battle.