Despite all my efforts my arm continues to get bigger - any advice please!

[bev4963]

I have Lymphodema in my left arm following breast cancer (chemo, surgery and radiotherapy). i had 26 lymph nodes removed from umder my arm. The Lymphodema started during radiotherapy in May 2011, Since then I have gone from a grade 1 sleeve and swelling of 3% to 11% in May 2012 and am presently wearing a grade 2 sleeve/gauntlet and my arm measures 28%. During the past year i have spent nearly £2K on private MLD and a 3 week course last October of multi-layering bandaging (this brought my arm down to from 17% to 11% temporarily). I am not overweight and I walk a lot. I have tried rebounding, nordic walking and homeopathy etc etc. My clothes are not suitable now and I'm feeling very down and well as very poor. Does anybody have any tips that would be useful? The only thing I haven't tried is swimming, I cannot swim, so that would involve more money for lessons. I do appreciate that I'm blessed to be well now but my arm is a constant source for anguish to me.Thank you,

[Poddles]

Hi Bev

I was saddened to read your post this morning. Can I ask, which NHS Lymphoedema Clinic are you attending? It could be that they are now offering DEEP OSCILLATION/Hivamat therapy at your clinic now and a course of this could help reduce swelling in your arm? If you want to contact me privately I can find out for you. My email is [e-mail]. best regards, Mary.

[bev4963 in reply to Poddles]

Mary, thank you for taking the trouble to reply. I have had Hivamat therapy as part of my MLD which is paid for privately, it does soften the tissue and my MLD practiitioner is pleased with it but unfortunately, in my case, it is not the complete answer to my problem. Regards Bev

[norberte]

hi bev

you poor thing - you do everything right, & the lymph still does whatever it wants

i don't know if you're thinking about more 'drastic' options but there are a handful of surgeons in this country doing lymph node transfer surgery with apparently good early results - they've been doing it in other countries for longer

the lsn helpline would probably know where your nearest surgeon is for that

another option would be to get yourself referred to prof mortimer's team at st george's for a really thorough assessment & their advice about what might be best to try

really frustrating for you, & definitely not fair

with swimming, though, if you're ok about the idea of being in water at all you could stay in the shallow end, put your shoulders under the water & wave your arms about in the water - you wouldn't get the aerobic benefits, which help keep everything moving, but if you go in with some compression on you'd still be giving your arm a workout that would help the lymph

i hope you find an answer - let us know how you get on

[bev4963 in reply to norberte]

Thanks for this advice. I will start some research. Kind regards. Bev

[Bestbrush]

So sorry. My history is a bit similar. I have been treated at a clinic affiliated to Prof Mortimer.

Over the 12 years since my op. my arm has enlarged to about 40+%. I am unhappy about it, but have learned to accept it. However, I also would love to try deep oscillation as I would like to bring it down, I do find im more prone to cellulitis.maybe Norbert could send me some info too?

[bev4963 in reply to Bestbrush]

Thank you, I'm sorry to hear of your case too. I have had deep oscillation (see reply above) and it definitely softens the tissue which makes any massage more effective -well worth you trying. Regards Bev

[Poddles]

Hi Ladies

Just a quick response to you. In Wales, one hospital bring their patients, with severe lymphoedema, in 3 times a week and they get 20 minutes of DEEP OSCILLATION at a high frequency/high mode followed by other parts of their treatment protocol. The results are very effective. They also have a waiting list for the personal units. They loan the personal units to patients on a two weeks basis to treat at home, so they can use two to three times a day whilst watching TV. I know they are also doing this in Stoke on Trent and Scotland, which is why I ask for post codes, so I can see whether an NHS clinic is close by or for those that can afford then a private MLD therapist who is using the therapy - although you can see this for yourselves on the PhysioPod website under "Therapists" Choose NHS/MLD section.

It really is that the case that the more DEEP OSCILLATION you can get then the quicker you can reduce and maintain the swelling and fibrosis and also improve skin conditions to lessen the incidence of bouts of Cellulitis. Can I ask Bev, how often were you getting the treatment, weekly, monthly? It may be that you do need a more regular treatment regime. If you send your postcode to me I am more than happy to see if there is an NHS clinic near to you that you could perhaps be referred to by your GP and then that won't cost you anything.

I do realise that currently it's a bit of a post code lottery as to where you can get this therapy but I hope that by word of mouth and effective results it becomes more widespread in the NHS.

For more information and studies, please email me on [e-mail]

Have a nice evening ladies.

Best regards, Mary

[bev4963 in reply to Poddles]

Thanks Mary, I will email you direct. Bev

[Poddles]

Ladies

lymphnodetransplant.wordpre... may be of interest for you regarding lymph node transfer - this is one ladies story of her own lymph node transfer (and others) but she also writes some very informative pieces, including links to stuff, very excitingly, a link to a site doing new research into artificial lymph nodes: sunnybrook.ca/research/cont...

You just need to subscribe to her blog, I did, and she regularly updates. I am very excited by her journey.

I also have a pdf summary of all the studies relating to Lymph Node Transfer, email me so I can send over, not at all sure how to attach documents on here.

I am informed that new research will be out soon too. If you would like me to keep you informed on here I am happy to do so.

Thanks, Mary

[naominorthenellis]

Hi Bev,

have you considered trying the Lympha-Press compression pump and the Comfy Arm Sleeve? I have lymphoedema myself and know how effective it is in managing my condition.

Please email me: [e-mail] and we can talk about you trying the lympha press

best, Naomi

[norberte]

hi bev

lots of suggestions - as you say, you'll end up doing the research, deciding what you want & fighting to get it when all you want to do is lead an ordinary life

at least when you come here you can get a bit of support from people who know what it feels like

bestbrush, i'm not sure what info you want from me - could you say more or was it someone else you were thinking of?

[lovesradio]

Hi Bev

I felt very sad too after reading your post. My arm has gone up and down a bit like a yoyo and have found that swimming and yoga both help, can keep sleeve on for both though I use older versions for swimming some of the time. Hope your research into availability of MLD and deep oscillation bears fruit, and like norberte I find this site invaluable for sharing info and tips and above all support.

[bev4963 in reply to lovesradio]

Thank you for taking the time to reply. I'm planning to return to yoga after a break so hoping that will benefit my arm and general wellbeing. Kind regards. Bev

[nicolams]

HI Bev, so glad to see you've had so many helpful comments - I was just really moved by your post cos its just really hard when the lymphodema just does what IT wants despite our best efforts. It may be unrelated or just my body but the swimming has really helped me, and amazingly the best thing for me is singing! Don't know if you sing but you could start...all that deep breathing gets the L fluid to move towards the truncal duct I think its called..

we are all so different so who knows.

And maybe some surgery if you can face it?

[Hidden]

I have been under the care of Prof Mortimer and the team since 2012 but all conventional treatments fail.

My arm is HUGE. 3 bids for Liposuction have been turned down 3 and my CCG closed my case.

I paid for a private consultation 2 weeks ago which gave me 45 mins with Prof M.

He was very kind and helpful and will start the bidding process again as my arm is now so heavy it's damaging my already very delicate cervical spine.

None of this will helpful to you but if you want to see the Prof/ Dr Gordon under the NHS you need a referral from a Consultant unless you live in the London Borougn of Wandsworth when your GP can refer you.

Very often your Lymphoedema therapist can you make a referral too.

I can't swim but I have found that exercising in water is very helpful even if you can't get in deep enough to be up to your neck.

Good Luck.

[Angelil]

Hello there

Have you tried altering your diet? I can only speak from experience (and I'm not a medical professional) but I tried the keto diet with great results. My legs are affected rather than my arm but my worst thigh was 58cm before the diet and is now 48cm. I lost 3 kg in weight (I wasn't over weight - BMI approx 20- and wasn't doing the diet for weight loss) and the nurses calculations suggested a 3 litre fluid loss. I increased my massage at the same time so can't say it was purely the diet that improved my condition but I am convinced it helped.

The Keto diet (very, very low carb diet) is quite hard going so after the initial boost I increased my carb intake. Now I follow a moderately low carb diet instead (I try to get my carbs from foods that are also high in fibre and nutrients) which seems to be working to maintain my condition.

I've also heard that the MCT diet is having really good results. Basically the fats in your diet are exchanged for mct oils which are absorbed straight into the blood from the gut instead of going into lymph system although I've not tried this myself!

Hope this helps!