Lymphoedema, Reconstruction and Lymph Node Transplant

Public Archive
1

Hi everyone

Ullevål Hospital in Norway has just started carrying out combined reconstructions and lymph node transplants on women who have had mastectomies and sunsequently developed lymphoedema.

There is not, as far as I know, much in the way of information in English about this yet, but the Norwegian Lymphoedema Patients organisation recently produced a short piece for their newsletter, which I have just had translated.

It reads as follows:

"Great News!
Transplantation of Lymph Nodes

In 2005 we wrote about a doctor transplanting lymph nodes on lymphoedema patients in Paris and Brussels. [NOTE - This would be Dr Corinne Becker - Bahons2]

The first transplantation of lymphnodes was carried out in Oslo on Tuesday 3rd February 2009.10.31

Tone Guettler writes:

It’s always interesting to keep up to date with the latest in our ‘lymphworld’, so we are happy to announce that the Plastic Surgery Unit at Ullevål University Hospital (who have spent the last year working intensely to establish a centre for lymph node transplantation), have started this work.

They have chosen a group of breast cancer operated patients, who in addition to breast reconstruction, willl also receive lymph node transplantation.

They will treat patients, who, in addition to removal of a breast because of cancer, have developed arm lymphoedema after removal of axillary lymph nodes, and for radiotherapy. The aim of this surgery is to get rid of the lymphoedema.

The reason the hospital has chosen this patient group is that it is easy to extend the breast reconstruction by taking lymphnodes from the groin - at the same time as taking a stomach flap to build up the breast.

The hospital doesn’t need to look for patients as there is a 1-2 year waiting list!

After this type of surgery the patient must have immediate treatment from a specialist lymphoedema physiotherapist. Firstly in hospital (5-7 days), then for three months when back at home. This means that lymphoedema treatment must be available and deliverable, both in Ullevål Hospital and where the patient lives.

When it comes to treatment of other lymphoedema patients (arising out of birth defects, uterine surgery, other cancer operations, injury and the like), it’s not possible at the moment. We wish, therefore, that these patients do not contact the hospital.

Dr Haris Mesic, in charge of microsurgery at the Plastic Surgery Unit at Ullevål Hospital, has promised to keep ‘Lymfeposten’ up-to-date on the latest development. We are very pleased about that."

X to all

S

2

Thanks for posting it, Bahons.

On Dec 16th I am scheduled for an appointment with Dr. Mesic.
I am very excited to learn more about this surgical technique and to be evaluated to see if I am a suitable candidate for this operation.

Will keep you posted on BCPals.

Cava

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Hi Cava

Glad to hear that you have not got many more weeks to wait - look forward to hearing more about it on bcpals.

Can’t tell you how MUCH I wish this option had been available to me when I had my recon in 1996 - my life since would have been SO different. I am fairly certain (in my own mind and some research suggests this, I believe) that the recon triggered the lymphoedema, as I had not had any radiotherapy at all that side.

But…no good looking back…have to think of the good things that have inadvertently come out of it, such as wonderful lymphoedema friends in many parts of the world :slight_smile:

X to all

4

Hi ladies - I’ve never contributed to a forum before - but this site came up when I was googling ‘node transplant for lymphoedema surgery’ and I was overjoyed to read that this surgery is actually being performed with positive results.

I also found another site: ww5.komen.org/ExternalNewsArticle.aspx?newsID=36648

Which goes on to say that ‘Arm circumference returned to normal in 10 patients, decreased in an additional 12 patients, and did not improve in two patients.’

I am 47 and live in Sydney, Australia. I was diagnosed exactly a year ago and had a mastectomy with full axillary clearance. I went on to have chemotherapy and radiation and had an acute episode of lymphoedema one week after finishing my radiation.

I have done the bandaging via the physio department at my local hospital and am now wearing the very attractive Elvarex sleeve and glove. It has taken 5 attempts to get a sleeve that ‘fits’ and we’re still monitoring my arm before ordering the second one.

There is so little information available in Australia in relation to lymphoedema and treatment doesn’t seem to have changed since 1932. I would love to know if there’s a website that shares tips from sufferers about what works best for them in terms of daily routines, massage, exercise, whether or not they can get away with not wearing their sleeve at night; what aggravates their arm etc.

I am so desperate for positive information on how to manage this thing. I have two young children, 5 and 8 - and want to be able to continue to lead an active life and participate fully in their lives. And hopefully, a few years down the track, the transplant surgery will have been fine-tuned and I can have the operation and get my arm back!

Anra x

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Hi Anra

And welcome to the bcc forums, expecially the lymphoedema ones!

I was amazed to hear that you live in Australia and have had such a grotty time with lymphoedema. Or were you just appalled at how primitive treatment methods still are, even after all these yearts? (You’re not alone on that one).

I have been to Australia twice to get treatment unavailable in the UK or the Continent. I had Low Level Laser Therapy (with a Class 3 scanning laser) + MLD in Adelaide. I can’t tell you how beneficial it was.

The first time I went, in 2002, I was assessed by Prof Neil Piller of the Flinders Medical Centre in Adelaide, then treated at the Lymphoedema & Laser Therapy clinic, also in Adelaide. (Can let you have details).

I don’t wear sleeves at night (I’m bilateral) - it sounds as tho’ you do? Was this suggested to you by a therapist? Sleeves perform best when your muscles are working, so they don’t achieve much when you’re asleep. However, there are special night sleeves, of a totally different construction, which can be worn - is this what you have?

I think Dr Becker has been carrying out these transplants in Paris for quite a few years now. I am aware that she has also been training other surgeons in France and America, as well as Norway.

The Lymphoedema Association of Australis has a good website:

lymphoedema.org.au

All the best for now…

X

S

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Hi Bahons2

Yes - it’s more that the treatment is still so primitive rather than I’ve received poor treatment.

I can’t believe you’ve had to travel all this way to get treatment yourself. When you say it was beneficial - what benefits did you experience? And what is MLD?

I’ve emailed Prof Piller and he’s sent me some literature. But I guess what I really want is some miracle cure - rather than more breathing exercises.

So you’ve got lymphodema in both arms? That is so unfortunate (I will stop complaining about my arm from now on!). I do wear a sleeve at night and yes, this was suggested to me by my physiotherapist. Where can you get the night sleeves from and is there any literature on why these are preferable (that I could show my physio).

I’ve looked at that website - and was overjoyed when I read about the benzo pyrone drugs and creams - however, when I mentioned these to my Occupational Therapist - she said they are not used due to the side effects. Neil Pillar also said they are most effective when there are vascular issues as well.

I’m going to try some laser therapy in January. My OT knows a company that rents machines out so that patients can perform their own treatment several times a week over the course of a few weeks. This is a much cheaper and easier option.

But I guess that’s all there is for us at the moment - bandaging, compression, exercise, massage and laser.

I hear the other day that they’re able to grow breasts now - hopefully they’ll be growing lymph nodes soon …

Where do you live by the way?

Talk soon,
Anra x

7

Hi again Anra, all

Trying to answer some of your questions…

The benefits of treatment with a Class 3 laser were, first of all, a smaller arm, but also an arm that has remained smaller ever since. The fibrosed area that had gradually built up on my forearm over the years since diagnosis (six) also virtually melted away and has never returned.

The laser is thought to work in three main ways:

Firstly, it acts as a stimulant on the lymphatic system as a whole; not just the area subjected to the laser.

Secondly, with the penetration of tissue by the laser beam to a depth of around 3 cm, healing and regrowth of damaged lymph vessels often occurs.

Thirdly, the laser softens and breaks down fibrotic tissue, making the subsequent massage much more effective. (Much more cost effective than traditional bandaging methods- and a lot more comfortable too).

I’d be fibbing if I said I’ve never had any trouble with this arm since. Subsequent taxane chemotherapy has proved a real irritant and, after developing a larger lymphoedema in the other arm in 2004, it’s been overworked, frankly, and often it doesn’t like it much. From being my ‘bad’ arm, it’s become what passes for a ‘good’ one with me (lol).

MLD is manual lymphatic drainage - you may already know it as just massage for lymphoedema.

By all means complain about your arm! Altho’ I’m bilateral, I’ve been fortunate that my hands have been (except during the taxane chemo) unaffected. Lymphoedema = misery. Treatments ARE incredibly primitive; they’ve been described as being ‘about as medically advanced as the iron lung was for polio’ - spot on, in my view.

Regular sleeves are NOT designed to be worn at night - they do no good. You can find info’ on night sleeves (and loads of other lymphoedema related issues) at wx3 dot stepup-speakout dot org (it’s not an official site, so I can’t post a direct link, I’m afraid). I don’t wear any sleeves at night, taking them off thankfully in the evening.

Yes, benzo-pyrones have been associated with death from liver failure, which is a crying shame as they actually worked; they weren’t a cure of course, but a big help. Benzo-pyrones are also present in haemorrhoid medication sold in some countries.

Good luck with the laser - is it a RianCorp LTU-904 that you are renting? (I have one myself). Other things you could try are Paroven (available without a presription in Australia)or Pycnogenol/grape seed extract. These don’t help everyone and the effect is mild and slow, but they might be worth a try. You could also try Daflon 500, if it’s available in Australia.

New lymph vessels have already been regrown in animals. This was done in Melbourne in 2003. It didn’t make the headlines in the way growing new t**s did, but that’s the Press for you. Here’s a couple of links:

theage.com.au/articles/2003/08/15/1060936056009.html

lymphireland.com/newsletters/Autumn%202005/update_on_research.htm

There’s hope for us yet, but it all seems to happen SO slowly. I was reading the other day that the lymphatic is the new ‘hot’ topic for research, so perhaps things will happen bit more quickly now.

I used to live in the UK, but have now moved to France. I have a lot more info on lasers and transplants - too much to post here – so do pm me with your e-mail if you’d like to know more.

All the best to all

X

S

8

Hi Bahons2

Anra here. You are such a wealth of information!

I am also building up a fibrotic area on my forearm - just below the elbow. I think the lymph is probably pooling here - as this is also where my glove finishes. My sleeve is 30mm whilst my glove is only 20mm - and I must both are now quite tolerable. I know you say that lymphodema = misery - but after chemo, I’m finding it’s not that bad (or maybe I just need a good dose of cellulitis!).

I’m glad to hear that your hands are unaffected - and I hope this means that your sleeve begins at the wrist. I would love to have my hand free! When I go to shake hands with people - I’m very conscious of their reaction to my gloved hand - and it tends to freak out small children as well.

When you say you have a laser yourself - do you find it as helpful as the Class 3 one?

And also, what is your routine? I know this may sound like a silly question - but I really struggle each day with when to do my exercises and massage and what to do throughout the day and what to do before I go to bed ie do you take your sleeve off just before you hop in, or a couple of hours and elevate it, or take it off and do some exercises.

I would just like to find out from other people what works best for them as I’m sure there must be a ‘best practice’ out there.

I try to walk for 30 minutes every day - swinging my arms vigorously backwards and forwards the whole way (my physio calls it ‘Nordic’ walking). I find my arm feels really comfortable during this period - however, if I don’t decrease the movement slowly enough before stopping - it becomes really tight. I’ve also taken up yoga and notice that so many of the exercises replicate those I already do to clear out my lymphatic system. And then there’s all the breathing in yoga - which is supposed to be really good as well.

I’m going to look at those links you sent me and will send you my email address.

Now I know why your English is so good!

Anra x

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Hi Bahons

I wish there was an award out there to give to you for all the info you are able to pass on…i told you before you need to start up your own web site, your truly are an amazing lady

Rhian x

10

Hi again - Rhian, lovely to hear from you. I wouldn’t know where to start with building a website, but perhaps I should try to learn!

Anra, you asked about my day…

Well, if I’m working, it’s usually in the afternoons, so I generally have quite a leisurely start and potter around sans sleeves drinking tea and reading e-mails and the the papers, etc on-line (we live in France now, so use the internet a lot for this).

I do SLD every day, but before that I normally give my worst arm half-an-hour with my low-level laser (doesn’t pack anything like the punch of a Class 3, but was about 10% of the cost. Plus you don’t need special training or protective goggles to operate one). This seems to to help, particularly with the area of fibrosed tissue that I have on my forearm.

Then I do SLD on both arms (about a 65:35 split in favour of the worst one), preceded by some massaging of the lymph nodes in my neck and collar bone and some deep breathing (a pilates exercise Neil Piller showed me, in fact).

The SLD that I do is basically what I’ve had to devise for myself (with input from the Australian lymphoedema clinic where I went for treatment) as my UK lymphoedema clinic were unable to suggest a routine suitable for anyone who had had an axillary clearance both sides.

When I’ve washed and dressed, I put my sleeves on (anytime from 10 am onwards) and they generally stay on, unless I’m swimming (which I do a lot), until I go to bed. That’s it, really.

I’ve got one of those little green balls for squeezing from the LSN (Lymphoedema Support Network - UK charity) and I try to remember (not very successfully, I have to admit) to use it every day.

I also take concentrated grape seed extract, availble from chemists and health food shops. I think it has a small beneficial effect for me, but it’s definitely nothing dramatic; I think I would just say my lymphoedema is slightly better with than without it. I take the equivalent of 300 mg of oligomeric proanthocyandin (OPC) every day, an antioxidant derived from grapeseeds (and probably other things, too). I understand that you need to take them for about 3 to 6 months before any effect to become noticeable.

At the moment, I’m getting half-an-hour’s MLD from a French physio once a week. In fact, this is pretty much ongoing, as my GP here will write me a prescription for about 30 sessions at a time.

When I sit down in the evening to watch TV etc, I park myself in a recliner chair and… recline! I find my arms are really comfortable like this, resting on the arms of the chair and almost horizontal - seems to do them a lot of good.

I don’t play the heroine when it comes to pain, as it encourages swelling. If I’m experiencing discomfort in my arms and shoulders, I take prescription anti-inflammatories (slow release diclofenac) plus over-the-counter paracetamol straightaway.

I also find a hot water bottle filled with chilled water very soothing and sometimes rest one, or both, arms on one in the evening - or put it behind my shoulders when I’m sitting down. I also often sleep with one. I try to sleep on my right (least bad) side and often put the bottle between my two forearms.

Fraid I’m not good at lymphoedema exercises and apart from shoulder rolling and lots of swimming, I don’t do any really. Altho’ my physio has suggested one I might try that doesn’t look too time consuming. The thought of devoting any more time and effort into controlling this condition puts me off, rather…

I’ve got a cheap orthopaedic pillow, too, as I’ve had a lot of neck and shoulder problems since my second primary and developing bilateraly lymphoedema.

If I spent less time at the pc, I’m sure my lymphoedema would improve. I’m seriously considering a vertical, ergonomic mouse, as I think this would be a great help.

Agree with you about the walking - anything that isn’t too violent and lets you warm up and warm down gently - will encourage the lymphatic system to pump a little bit better.

I think there are a number of things that are universally good for lymohoedema, but it’s such a quirky condition that it’s also possible to discover odd things that really help you as an individual. For instance, I’ve discovered that making pastry - all the rubbing-in and rolling out, makes my arms feel incredibly good. But it might not work for anyone else.

I’m going to sto now, or this post will be too long and I have to go out. Anra, I got your e-mail - thanks!- and will be replying to that very shortly as well.

X to all

S

11

Hi Bahons - thanks for that reply.

I found your morning routine particularly interesting as when I wake up - I always lie there for a little thinking about my next move. Because I’m still early days, I’m a little paranoid about doing anything before I get my sleeve on - which usually means going from the bed to the shower - as I don’t want to put it on and then have to take it off and put it back on again after a shower.

I also usually do my breathing and exercises before hopping in the shower, as my arm circumference below the elbow has usually increased slightly - due to me wearing an old garment at night. We think this is just the build-up at the elbow redistributing down the arm.

Another thing I do when I wake up that really helps me - is just lie there for 5 to 10 minutes with both arms together above my head and my hands clasped. I find that this helps to stretch out my arm - especially under the armpit - and release some of the tension from the scarring. I had a few problems with arm movement after my surgery - which could have been due to the tissue expander - but since getting lymphodema - my range of movement seems to be better than ever - go figure! Perhaps it’s because I do so much more stretching of the arm now … and perhaps in this sense, the lymphodema has actually been a good thing - as I know some women who can’t raise their arm above shoulder level post surgery.

BTW: Is SLD - simple lymphatic drainage?

Neil sent me a breathing exercise - where you stretch both arms out to the sides, whilst breating in, and then bring them back into the chest whilst breating out - the whole process taking about a minute. Is this the one that you do?

I like Rhian’s suggestion about a website, because I believe, as you’ve said above - that there must be things we can do that are ‘universally good’ as well as those other ‘odd things’ that also seem to help certain individuals - and it would be nice to be able to share these things on a global scale rather than everyone having to undertake their own voyage of discovery. I don’t know who would build this website - as I’m certainly no guru - but perhaps there’s someone out there who has both lymphodema and website skills …

I’m ecstatic to hear that making pastry works for you - as I usually make fruit mince pies every year for Christmas and was a little worried about how this was going to go this year.

However, regardless of what works and doesn’t work - I’d have to say that apart from it being a pain in the backside to manage, there is nothing (yet) that it has stopped me from doing - apart from being spontaneous.

Anyway - must go and do some housework!

Looking forward to your email and next post …

Anra x

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Hi again, Anra, all

Have just e-mailed you a TON of stuff. Hope it doesn’t give your pc indigestion.

Re: getting up in the morning and putting a sleeve on straightaway. I know some people need to have their sleeves on the minute they get up, but I’ve found that I’m comfortable for a few hours as long as I’m not doing anything too strenuous or energetic. Sleeves work when we’re working, so if I’m not doing much, neither can they.

Yes, SLD is Simple Lymphatic drainage.

Yes, Neil gave me the same exercise, too, but I usually fit in about 4 or 5 in a minute…I’m doing it far too fast, I reckon!

Re: the night sleeves. Excellent thread on breastcancer.org about this at the moment:

community.breastcancer.org/forum/64/topic/744512

There’s a really good explanation on there by a lady called Binney4 of why it’s not a good idea to wear day garments in bed, which I’m putting below…

“The day sleeves help our bodies pump lymph fluid by applying evenly graded compression to the skin. The superficial lymph vessels lie just below the skin, between the skin and the muscles. When our muscles move below them and press them against the gently compressed skin, it acts as a pump to help keep the lymph flowing. When we’re not moving, that action doesn’t happen. But the biggest problem with sleeping in day garments is the risk of their bunching up around the elbow, top or wrist, or twisting on our arms when we turn over. If that happens it can result in a tourniquet effect and actually cut off lymph flow. No good! And being asleep, we’re not likely to notice it until it’s had time to build up fluid”.

Bye for now

X to all

S

13

Hi Ladies
I have lymphoedema and following your posts , my lymphoedema is getting me down more that my breast surgery and treatment for bc . Arm gets very hot and warm around elbow so have had loads of antibiotics but bloods are not showing infection, lymphoedema nurses cant treat me till heat has reduced and dont think it will reduce until I have treatment !!!
So feed up . Arm was measured at 7% since rads it has increased to 17% not had measured for a while and I can tell its even bigger …
Lisa

14

Hi Lisa

So sorry to hear that your lymphoedema is such pants at the moment. 17% is a real bummer.

My bloods didn’t show anything either, but I definitely had cellulitis! And was given antibiotics for it. Co-Amoxyclav. Still taking them, in fact. It’s taken over a fortnight’s worth to get it under control, but I think it was because of the chemotherapy as well.

They also gave me a scan to check there wasn’t a thrombosis (which they admitted was unlikely, but wanted to be sure).

I spent quite a lot of time resting my arm, with a hot water bottle filled with chilled water underneath it. (In fact keeping it as cool as possible really seemed to help). Have you tried this?

I also found I couldn’t wear a sleeve for a few days as it just seemed to make it worse. You too?

I’m not surprised you are fed up - and that’s probably putting it mildly. Hope you turn the corner soon and can get some treatment treatment organised for your arm.

Thinking of you

X

S

15

Just a thought, lisaf…

Might you have tennis/golfer’s elbow as well as/instead of cellulitis?

It sounds a bit like it and it can really aggravate lymphoedema.

X

S