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Kind regards Sam (BCC Facilitator)
I know it may seem strange, but i have no symptoms from my mets (apart from sideeffects of treatment) so physically fine, emotionally learning to live with it, yes once in a while things go up in the air so to speak but you deal with it. Lymphoedema is constantly there, you can see it as well as feel it and it does bother me, its a day to day constant reminder. Its weird coz its not a life threatening condition and a well meaning friend said to me once well at least you are still here and then you think you're sounding ungrateful and you're not allowed to complain you should be grateful you're still here. I'm waffling now.
Great to hear back from you so soon!
Sorry to hear about the pain in your back and shoulder - the extra weight caused by lymphoedema can do that. Have you tried a hot water bottle filled with cool/chilled water on the aching bits? And has your GP given you any good anti-inflammatories - diclofenac, for example?
I'm surprised they haven't given you a sheet of exercises to do - I thought that was pretty much standard practice these days. Self massage - yes, I do it, I think most people do - how much does it help, who knows? Sometimes all these little things we do for ourselves add up to an eventual small improvement, I imagine. Something that I do know works a little is deep breathing, as I've been hooked up to a bioimpedance machine (when I went to Australia for lymphoedema treatment) before and after doing some and it does help to move a bit of fluid out of the arms and, I think, into the deep lymphatic system. I'd definitely recommend drinking plenty of fluids and there are other ladies who have posted on here who have found that cutting down on alcohol has helped (not my first choice for lymphoedema management - I like my wine!)
Grapeseed extract - I usually (not at the moment, cos I'm having some more chemotherapy, I'm afraid) take 300mg per day as two 150 mg tablets - one at night and one in the morning. It won't have a dramatic effect, but it is thought to have a mildly beneficial effect which can be measured after about 6 months of taking it continuously. I think you could probably buy it in Boots, a health food shop, or online. (I've actually recently moved to France where you can buy it over the counter at the chemist as a recognised treatment for lymphoedema). I'll be glad when I can start taking it again, as the treatment I'm now having is not good for my arms at all.
Lasers - I bought mine from Riancorp Pty (Sorry, I think you'll have to google it as I'm pretty sure I can't post the link) in Australia, by mail order. They aren't cheap, currently about Â£2,000. I wouldn't necessarily advise rushing out and buying one, tho' - see how your bandaging goes first - it can be very effective. It's getting the swelling down that's important, then concentrating on maintaining that reduction, so hopefully your bandaging will be a success and you'll get the follow-up support to maintain your arm in a much healthier condition from your clinic.
How did I find out about the lymph node transplants? My (private) lymphoedema therapist told me about the French surgeon who has been doing this for a few years now. I did go to Paris to see her, too and she is lovely and said she thought she could help me. Sadly lack of funds and then more dodgy health have so far prevented me from taking it any further. I have just e-mailed a couple of ladies here a tranlsation of an article that appeared in Paris Match about her a few years ago - and I can send it to you as well if you would like to PM me with your e-mail address. (The German man doing the transplants was the subject of a feature in last quarter's 'Lymphline' - the magazine for members of the Lymphoedema Support Network).
I don't know about me knowing all the answers! - I've just lived with this pig of a condition for a long time, 7 years with it in one arm and then another 4 with it in both. I've been lucky to meet a lot of very knowledgeable people, mostly because I've had to fund so much, in fact nearly all, of my treatment privately until very recently. I've also ferreted about on the internet quite a bit to see what I can discover and to learn how they do things in other countries, especially the States and Australia.
I've rambled on again - too much information, probably! You aren't limited to what your clinic can offer you - a lot of them seem to be terribly underfunded, really just a measuring and sleeve ordering service - but you can try other things if you can afford it, which seems terribly unfair.
Hi Lynne - do you really enjoy my rants? I'm glad they make you smile! It's interesting that lymphoedema causes you more hassle than the mets at the moment - I don't suppose anyone who didn't have lymphoedema would believe that for a minute, but I wouldn't doubt it for a second.
We're not alone with this, people!
Take care and post soon, everyone.
I've had lymphoedema for a year now, dx bc Jan 07 and mets in bone, ovaries soon after. Even though have secondaries, so far its being controlled, I find its the lymphoedema that causes me most problems at the moment. I hate wearing this sleeve, but unable to receive any other treatments. My arm is 30% (had first reduction last month from 33%) but it has to be 40% plus to receive bandaging etc where I live. Reading all these threads does help, you realise you are not alone, as people don't understand the frustrations etc of having this problem
Bahons 2 has been wonderful with her advice and knowledge, I love reading her rants, they make me smile. Dont take that the wrong way Bahons2 coz totally agree with what you say.
Take care everyone
Thank you so much for your lengthy reply. Wow -you seem to have all the answers,
I developed lymphoedema last year and it has gotten gradually worse. I get a lot of pain in my back and shoulder too.
I am starting compression bandaging soon. I am so hoping that my arm will reduce and I will be able to do all the things I used to do before the swelling. Being an active person before, I hate the restrictions that this rotten condition imposes.
I have never been given exercises to do - and I don't actually find the massaging I do myself actually helps that much. You are right when you say sleeve wearing alone doesn't help, my arm is still very swollen but it does reduce my hand swelling a little though.
Nothing much happens at the Lymphodema clinic; we talk, my arm is measured and I am given yet another sleeve to take home and try. I have been given some massage on a new machine they have which lasts around 15 minutes. I think it helps but its the case of too little and not often enough really to be effective. I go to the clinic every fortnight at the moment.
I have noted your paragraph about the Haddenham "Venex" sleeve and will discuss with my nurse when I go next.
I haven't been given any info about what I should do to reduce the swelling so thanks very much for the advice you have given. I don't drink enough as I thought it would make me swell more!!! Interesting what you say about the acqua aerobics - I think I could give that a try too. Also, where can I buy the Grapeseed Extract from? Can I buy in local Health Shop? So many questions but it is great to talk to someone who seems to know so much about lymphodema. Where do you buy these lasers from too?
Feeling alone and isolated with this condition is dreadful. I look at everyone to see if they have a swollen arm, I know I am becoming too focused on it all and it is ruling my life and I want so much to change that. I think this web site will help me though in realising I am not alone.
Just reading what you wrote about the advances being made in France and Germany with transplants has boosted me so much. Where do you get all your knowledge?. You are a gem and I am so grateful you have replied. Your reply has given me hope for the future. I feel there are other routes and more options now. Thanks so much.
I hope that things stay good for you . I will let you know how the pet scan goes.
Thank you so very much for posting a reply.. It really has perked me up. I dont feel so alone with this awful thing. Saw the Lymph nurse yesterday and feel more positive about the daily bandaging I am starting in a couple of weeks.
I am sorry that you have had such problems with the swelling. I know how you feel having the cancer so young, It has dogged my life since age 35 but believe it or not I am usually a very positive person and have been in the past but right now it feels like I am drowing!!
I think we all feel the same re fear of recurrence and spread. The thing is, I can deal with that if I feel well. After all, nobody comes into this world with a guarantee that they will live a long healthy life. We just have to make the most of being well everyday and let the future sort itself out.
The problem with all this swelling is that it stops us enjoying everyday; trying to find something to wear; getting dressed and undressed takes forever as it's hard to use the swollen arm. Its just so restricting and a constant reminder of having breast cancer. That is what I hate the most.
Great news that your scan came back clear, what a relief.
I havent heard of laser treatment before but will look into. Bahons has written a really lengthy reply and she refers to a hand held Riancorp Class 1 Laser. You are right, she does have many useful tips.
Thanks once again for taking the time to reply.
Hi Maddie (and Rowena!)
What a rotten time you are having! My heart goes out to you - I know how you must feel. Lymphoedema has been called 'Breast cancer's dirty little secret' and it's so true. The pyscho-social effects can be devastating.
You don't say how long you've had lymphoedema for - is it many years? Have you joined the Lymphoedema Support Network and/or a local lymphoedema support group? They are wonderful for helping you to feel less alone with this rotten condition - and to keep you posted on any new developments/clinical trials and your rights. I would also recommend www.uklymph.com/forums as another good source of support and info.
I've had two PET scans (not for worsening lymphoedema) in the past year - they are time consuming and boring, but I didn't find them as claustrophobic as MRI. I think they often scan when lymphoedema gets worse, just to make sure there is nothing going on as it can definitely be a sign, although, I believe a rare one, that there is something untoward going on.
What can be done to control/improve the swelling? Well, the answer is, quite a lot. The point is, has anyone been doing it, or is the banding (by that do you mean compression bandaging?) the first attempt at positive action by whoever is repsonsible for your lymphoedema care?
I've had compression bandaging, in conjunction with manual lymphatic drainage, in the past for one of my arms (I've got it in both) and I did find that it improved things and I was then able to maintain that improvement myself (by being a good girl with the sleeve and a bit of self massage mostly - I'm not much into the exercises they give you).
Sleeve wearing on its own does little, if anything, to reduce swelling. A well fitting sleeve will help to maintain any improvement achieved by active intervention (ie the compression bandaging + hopefully massage that you are about to have) and can help to prevent swelling getting worse. It's damage limitation, that's all. Maddie, you say you go to the lymphoedema clinic regularly, what are they doing for you there? Has your bandaging been arranged through them or with a private lymphoedema therapist? You say your sleeves have all been uncomfortable - has anyone suggested you try a Haddenham 'Venex' sleeve? They are very soft and smooth, not nearly as scratchy as the Medi UK ones they always seem to want to try first.
I'm sure you'll already have been told all the little things you can do to help yourself. Like.... losing weight if you need to, drinking plenty of fluids to help eliminate of lymph from the tissues, swimming/doing aqua aerobics (if you like the water) as the combination of compression, cooling and exercise is very beneficial. I also take concentrated grape seed extract (can post more details of this if you are interested) and I think it helps a bit, but the results are very slow and not very dramatic- about 6 months for a modest improvement.
I've also bought myself a hand held Riancorp Class 1 laser, after travelling from the UK to be treated in Australia a few years ago with a big Class 3 version and I think this also helps, too.
This condition is the pits (Rowena is SO right when she says that non-sufferers just don't 'get' how terrible its impact can be).
I can witter on for ages about this (as many here can testify!), so I'll stop now about apart from wanting to end on a hopeful note. At the moment lymphoedema is incurable, but that doesn't mean that it is untreatable. We all need help with it to a greater or lesser extent and wringing that help from the largely indifferent medical profession that caused it in the first place can be very difficult, but not impossible. And there are advances being made in the treatment of lymphoedema. Progress has been made with lymph node tranplants in France and Germany. Australia seems to lead the field in Laser therapy. CRUK has carried out trials using Hyperbaric Oxygen Therapy to treat lymphoedema. Things are happening.
Don't give up hope - I haven't, tho' some days it's really hard not to get very,very down indeed, I know.
Post again, Maddie won't you? You're not alone. I'm sure other users of this Lymphoedema board will add their support soon.
And very best wishes for good results from your PET scan.
So sorry to hear of what you're going through.
I have moderately severe lymphoedma in my right arm and recently had worsening lymphoedema on my r chest wall and cellulitis. My lymphoedema practitioner said I must see my oncologist for a check. He said he couldn't feel any abnormalities but referred me for a MRI scan. I had the scan on Friday and got the result today, no sign of mets or recurrence so a great relief. So don't be too pessimistic - it may well be 'just' lymphoedema, but it needs to be checked out.
I have to decide what to do about my lymphoedema now and I don't have any answers. I am looking into laser therapy and also need to start to wear my sleeves more often.
I have had breast cancer and a mastectomy and chemo age 37. I am now 41. For me lymphoedema is the worst thing - apart from the fear of recurrence and spread.
Bahons on this site is very well informed and motivated and has got lots of useful tips. I would recommend looking at her posts.
I haven't got any answers but I do empathise with your situation. My lymphoedema makes me very unhappy - it is so chronic and uncontrollable - and non-sufferers find it hard to understand.
I am sorry to read that you are feeling so low and worried, please call our helpline for some support and a 'listening ear' which may help a little. The number is 0808 800 6000 and is open Mon-Fri 9am-5pm and Sat 9am-2pm. I am sure that your fellow forum users will also be along soon with help and support for you.
Take care Maddie
I have quite severe lymphoedema in my arm and went for my yearly check at the Cancer Centre today. The specialist has advised a pet scan to check to find out what is going on. I get alot of pain in my back and under my arm now. I am terrified that it will turn up more tumours. I have had cancer 3 times in last 20 years and the last time ( 2 years ago) was the worst. 25 out of 26 lymph nodes affected. It's the waiting for the results that I hate so much. Has anyone else with Lymphoadema had to have a pet scan. Also has anyone advice on managing the swelling. I go to the Lymph cllinic regularly but so far nothing has improved. The sleeves are uncomfortable and dont really help. We have tried so many different types. Am going to start banding the arm on Nov 3rd for 3 weeks. Will this really help? I am banking on it. Has anyone else been through this banding process? I feel so desperate with it all now and life hardly seems worth living at times. Sorry to sound so pathetic but after everything else the lymphadema is just the last straw for me. I feel so low. My doctor has prescrfibed anti-depressants but that wont cure my 'fat arm' will it? I just want my life back.