reduction in swelling

I just wanted to mention that my lymph O which is only mild at 7% has reduced in size. This is contrary to advice and info from various sources saying it can’t be cured. I was told that if it changed, it would only ever be for the worse.

Well mine is very noticably less. I put this down to 2 things. I have pretty well stopped drinking alcohol, and as a consiquence, I have lost some weight.

So it is possible for some people to have an improvement.
Good luck

Irene

Irene,

Your feedback is most interesting. I too have mild Lymph O - checked out by Registrar and Physio two weeks ago who confirmed by their measurements that things had got worse. Prescribed an even tighter sleeve. Wore it for one day - hand swelled, arm swelled , felt crud - so gave it up. One week later, no sleeve, hand normal , arm almost so - result!!

Janeyb
x

Hi Irene

Great news about your arm - I’d heard that alcohol can make lymphoedemea worse for some people - and it’s full of calories, of course! Losing weight must give lymph vessels less tissue to drain - less work for them to do.

Janeyb - sounds like you ended up with a really duff/badly fitting sleeve (not uncommon, in my experience) - good to hear you are getting better, too.

I think lymphoedema clinics should realise that sleeves are just PART of the solution (as Irene has found) and that it’s not a ‘one size (or three!) fits all’ situation. I think they also need to be aware that sleeve manufacturers can have issues with quality control and that as a resuly sleeves do sometimes come off the production line with incorrect, or even reversed, pressure gradients.

Bit early for a rant, even for me…

Sorry! All the best to you both.

X

S

My story is much the same as yours Irene! My Lymphoedema was 7% and at my appointment last week, it had gone down to 5%. i have a new lymph nurse who made sure I do my exercises everyday and she gave me a better fitting sleeve. I have done my exercises for a month and have worn the new sleeve for a week and that’s what’s made the difference. She seemed to think that if this continued, I may get to the stage where I don’t have to wear the sleeve every day, just in certain situations. Here’s hoping!
Hattie x

Interesting news, ladies, and it’s wonderful to hear that yours has reduced.

I’ve been spending a lot of time at my caravan and “being kind to myself” time - doing exercises, not drinking as much, applying cream regularly, massaging. I feel my arm is getting bigger!!!

A friend of mine has lympho in legs. She doesn’t drink, smoke but exercises regularly. Hers started in one leg and is now in the other. Don’t know the percentage but her ankles almost seem the same size as her thighs, poor luv.

I’ve now accepted that we all come in different shapes and sizes, and it seems that with lympho, what’s good for one isn’t necessarily good for another :(. Bahons2 is a good example. It appears that she’s done all she can to control hers but it’s spread to the other arm. (Sorry, may be wrong and if so I know I’ll be corrected.)

Good luck to us all.
Maureen xx

Hatts - great news about your arm! Do you still have to wear a hand piece or did you get a different brand of sleeve in the end?

Hi Maureen

Sorry to hear you think your arm is growing again. Can you get to a clinic for some help? Have you been doing anything different with it? PC, ironing, throwing?

You are right about me having lymphoedema in both arms, but that’s because I’ve had bc in both breasts. I think the first lymphoedema was probably triggered by the reconstruction surgery, as I had had no radiotherapy to that side. The second was caused by the radiotherapy, I think.

The first one has always been pretty mild and easy to control until this last week when the combined effects of over-use (resulting in tennis elbow) and Taxotere sent it a bit haywire. I’ve been swallowing lots of painkillers, resting it and I’ve been able to get some MLD (with onc’s approval) and it now seems to be settling down a bit.

The other arm is slightly worse, but not too bad. It’s had LE for about 4 years now and if I’m honest, I think it’s very slowly improving. I’m not a great doer of exercises (I have ongoing problems with tennis elbow in this arm as well, which means a lot of them are out), but I do swim quite a bit, massage it and I’m conscientious about wearing the sleeve. The arm likes to be used, so I do, but in moderation. It’s my left arm and I’m left handed, so I don’t have a choice anyway for a lot of things.

Since I’ve been on Taxotere, I’ve gone off alcohol to a large extent (they tell you not to drink with it anyway!) and I’m with Irene here, I think it’s helping my worst arm. Perhaps it’s not a case of alcohol making it worse, but no (or reduced) alcohol making an improvement? A bit of a drag, eh? I like my wine!

All the best to all

X

S

It must be pretty tough to have it in both arms Bahons2. At least with one arm you can still lift (to a degree) with the other arm. Sounds like you have had a bit of a nightmare with it all. I have gone back to the sleeve with the hand piece which is a bit of a backward step so am now just hopeful that I may be able to reduce it’s wear at some point. Who knows. Nobody really seems to know how this condition behaves itself!

Hi all

Maureen, do I remember that your treatment is at Christie’s – maybe your onc could refer you to the lymphoedema physio there? I didn’t know there was one until I grumped to my onc team about vile fat arm at last appointment; I’m seeing the physio there next week, and will let you know how that goes. I was given a sleeve by my hospice last year when my arm “blew up” 10 years after surgery, but have only worn it occasionally, as it (a) takes forever to put on and makes my bone mets hurt in the process and (b) immediately rolls down my arm, even with the lovely/stinky glue. Although it was the best option the hospice could offer me, I don’t think it was quite the right size for me then (and probably won’t be now), so hope that Christie’s will come up with something more suitable.

Marilyn x

Hi all

Hatts - yes, it is a bit of a drag having it in both arms. (I do have various coping stategies - healthy back bag for small purchases, lots of pockets in my clothes and a tiny handbag!) Sorry to hear you are back with the handpiece again - what a pain that must be.

I think what annoys me most is the cavalier attitude of the medical profession towards lymphoedema. The one thing I didn’t visualise having to do when being treated for bc was to have to educate almost every doctor and nurse with whom I came into contact about it. There’s a lot spouted about patient empowerment with this condition, but it all counts for nought if some ignorant so-and-so sticks a needle in your arm once you’ve been anaesthetised. Or you come round afterwards and find one of those automatic bp cuffs exactly where you said it couldn’t be put!

Marif - if your sleeve won’t stay up, it can’t be doing much good. There are loads of different sleeve manufacturers - Jobst, Juzo, Sigvaris(?), Haddenham - so perhaps a different brand would work better for you (I imagine you’ll have to ask to try a new make - not a lot seems to get offered voluntarily) - everyone seems to get a Medi one whether it’s suitable for them or not. Plus, it is possible to get a custom made sleeve made if you need it. Good luck with your physio appointment. Let us know how you get on, won’t you?

It never ceases to amaze me that surgeons will remove lymph nodes, and oncologists arrange for their irradiation - both really drastic and irreversible treatments, but when you get a problem with your lymphatic system as a result, they know next to nothing about treating it and seem to care even less. (At least, this has been my experience - a previous onc even suggested acupuncture! And my surgeon said it would disappear in a few weeks - that was 1997!!!). It seems to be less than the dust beneath their chariot wheels…

Bye for now!

X

S

Hi all,

I am so happy to read all about lympho cos sometimes i feel that i am all alone. Mine started a couple of years ago and when it was measured it was 5% and i was told to wear the sleeve and nothing more. a couple of weeks ago when it was measured it was 30%. The lympho nurse had to arrange multilayer bandaging everyday for 3 weeks except weekends. I started last Tuesday and when it was measured on Friday it was 21%. That was good progress. Although it is very uncomfortable, I am persevering. I really hope that by next Friday when it is measured it will keep on going down. Has anyone been thru multi layer bandaging? will keep u all posted with the progress!

Hi, all

Hottie, my friend with lympho in her legs has the bandaging from time to time and she says it certainly helps. Don’t know what the long-term effects are though.

I remember years and years ago when I was a trim size 12 and thought I was huge and I had bandaging on my torso. We were going out somewhere special and just HAD to lose 3 stone overnight!!! the bandaging squashed everything in for about 12 hours then I was back to normal.

Bahons, no, I haven’t been doing anything out of the ordinary to make my arm swell more. Hubby says he’s going to put a hook in the ceiling above where I sit and then he can put a cord with a strap or something so that I can keep it elevated - we’ll see … I can picture the hangman’s noose and I’m sure his eyes lit up when he was explaining it all to me hahahaha.

Marilf, yes, I’m at Christie’s. They sent me to St Anne’s but apart from measuring and trying different sleeves, they haven’t done much. Don’t know what else is available there. Plenty of ladies on here advised me about sleeves when mine was rolling down. I went back and they gave me one with skin glue. It was an absolute farce. Ruddy glue was everywhere and all it ended up doing was gluing the sleeve in a roll down position. They then gave me one with silicone strip and that’s been fine so far. So maybe you could ask for one of those?? Someone here said her friend had the glue and it ripped her skin and caused cellulitis.

Thank you all for your help and input.

Good luck to us all.
Maureen xx

Hi Hottie

Sounds like you are doing really welI to get a (9% reduction in just a few days!

I had multi-layer/compression bandaging in, I think 2001, to what has since become my ‘good’ (or least bad) arm (ha ha). I was very pleased with the outcome, as it brought about a permanent improvement in my case.

Maureen and Marif - hope you get MORE than just measurements and a bigger sleeve! Sounds like you both need some active intervention to help to get your arms back on track.

Look forward to hearing from you…

X

S

Hi Bahons,

When u had the multilayer bandaging did u have it everyday for 3 weeks?

Hi Hottie!

I had it for two weeks - didn’t really need a third. (Can’t remember if I got weekends ‘off’ or not! - Don’t think so…)

X

S

It seems to me from personal experience plus points mentioned on here, that not much is really known about Lympho. I became very upset when mine was diagnosed and all the info was most depressing and yet I have had a positive result when not even trying. PS, I don’t wear the sleeve and never did, I decided it just wasn’t neccessary for my mild condition, but was bullied and frigtened into giving it ago, as I said earlier, I was told it would never improve, ha!

I agree with you, Irene

Not much seems to be known about lymphoedema and there isn’t much research going on, either, as far as I can tell. The medical profession just shrug their shoulders and tell you it’s something you’ve ‘got to live with’. I think it’s brilliant that your arm has gone down. Losing weight and drinkkng less certainly seem to help you.

I’m looking forward to my lymphoedema disappearing, too - I’m having chemo at the moment and I can barely eat a thing!

X

S

I think because mine was mild to begin with, the reduction was more noticable. Really though, my main point is the negative delivery of ‘facts’ was almost enough to send back to docs asking for anti-depressents (I didn’t thank goodness).

Irene

You make a very good point about the ‘negative delivery of facts’ and lymphoedema. I used to return from my lymphoedema clinic so depressed sometimes, when it all seemed to be a list of ‘don’t dos’ and ‘no, we can’t offer this or that treatment’. And although I wasn’t expecting state-of-the-art treatment, I was hoping that they might have been at least aware of new products, devices and techniques, not to mention research. I feel the philosophy should be to reduce the big L as much as possible and then give the patient every reasonable assistance to keep it that way, including monitoring any increase very closely - ie, in terms of weeks, not months. This is not just good for patients, it is cost effective, reducing admissions for cellulitis, prescriptions for antibiotics and helping to keep patients in paid employment.

Although, compared to many other complaints, there isn’t much R & D going on, that isn’t to say there’s none. I think that it as the long term survival rate for cancer continue to rise and with it the number of lymphoedema (as it can occur even 20 or 30 years after treatment) sufferers rises we will see new treatments, hopefully drug based, and better surgical techniques, too so that those following us might be spared.

(I read a brilliant quote a few months ago - can’t remember where- probably an Americal lymphoedema website - to the effect that ‘present methods of treating lymphoedema are as about as medically advanced as the iron lung was for polio’, which I thought summed the current situation up extremely well).

All the best to all!

X

S

Hi Irene

Just wanted to say that I hope your arm is still good, but please don’t overdo it at the moment (would hate for it to flare up) when you have so much else going on in your life - hope all works out well for you!

X

S

I saw my radio doc last Thurs as rads comes to an end next week and in the course of general examination she commented that I no longer have any visible symptoms of lymphodema - which surprised her because rads often causes it to start, & usually makes existing conditions worse. I told her I’d worked up to an hour a day of aquajogging over the past 13 weeks & lost nearly 10 kg in the process - plus cutting down and then cutting out wine completely (instead of a bottle plus per day which has, I am afraid, been my practice for years), and she said that weight loss, swimming & sobriety were probably the most advanced treatments available for lympho at the moment. We laughed. Last Monday, because the skin under my breast had cracked, the nurses forbad the public pool - & I have to say, it’s the first time throughout this whole sorry business that I cried in front of the medics. Too silly. The doc reversed that bit of nonsense, thank goodness. No harm done, if one washes carefully afterwards - as one does anyway. So I’m off to the pool right now - to catch it early before the Saturday crowds.