Have i got Lymphodema

Looks like i have developed lymphodema now. Only just finished taxotere. Not had rads yet. Which are due to start on 5/1/09. Done everything as advised exercises, gloves for washing up, no heavy carrying etc etc and still i have it. Forearm is 2 inches bigger on right than left. Whole body feels in terribly state. Have put on half a stone in 2 weeks despite eating less. Thought it was fluid retention. Have appt with physio on MOnday. Feeling very depressed. Had surgery in March 08.

Dear Starfish

In addition to the helpful advice you will no doubt receive here, the following link will take you to a publication which you may find helpful to read, it is a factsheet containing information about lymphoedema after treatments for breast cancer:

breastcancercare.org.uk/docs/bcc_lymph06_0.pdf

You are also welcome to contact our specialist nurses if you feel it would help to talk things through, please call our helpline on 0808 800 6000 weekdays 9-5 and Sat 9-2.
Best wishes
Lucy

Sorry to hear that Starfish. I developed mine over a year ago not long after rads finished its a bummer. If it is lymphoedema the quicker you see someone the better. Its a slap in the face when you have done everything to avoid it, but once undercontrol it can be managed. OH the joys of this c***y disease!! Its good you are seeing someone early. Good Luck for Monday.

Take care

Lynne x

Hi Starfish

What rotten luck, especially as you have tried to help yourself as much as possible.

I already had lymphoedema when I started Taxotere a few months ago and I think it made it worse. It does seem to be starting to improve ever so slightly four weeks after the last dose, perhaps yours will too. When you start to lose weight again, this may well help your lymphoedema as well.

You said you had a physio appt - have you been given one with the lymphoedema clinic/nurse (for a sleeve - any exercises the physio may give you are best done wearing one) as well?

Anyway, welcome to the lymphoedema board (but so sorry you’ve had to join us) and do feel free to moan all you want.

Hope the appt goes well on Monday.

X

S

Yep moan all you want, I do don’t I Bahons2. It’ll make me feel better.

The physio I am seeing specialises in lymphodema I believe. I think i am very lucky to get such a quick appt. Concerned I am starting rads and this has happened so perhaps early intervention will minimise things. How does lymphodema work if that is not a stupid question? Once the arm has swelled does it stay that way. Or does it go up and down? What is the purpose of wearing a sleeve. I put mine down to wearing a tight coat (need to lose weight) and lots of layers because of cold last week and travelling for 2 hours in car. Noticed it on car journey. The swelling has come down slightly since getting home and not wearing offending coat! Does having lymphodema rule out a reconstruction which I was hoping for later. I had read somewhere that you couldnt have a reconstruction if you had lymphodema.I do believe that taxotere had a lot to do with it. It is absolutely vicious to the body and hopefully to the cancer as well. I suffered very badly from eczema i think whilst on it on hands and arms and on last dose it spread nearly all the way up arms and skin peeled very badly. Now one month after finishing taxotere i get this.

Lynni - I don’t think you moan very much at all. And considering what you’ve had to put up with recently, you’ve every right to!

Starfish - I think there are people on here with lymphoedema who have had reconstructions and can tell you about their experiences (which seem to be pretty positive, as I recall). My own mild lymphoedema on right hand side (non-irradiated) occurred a few months after a TRAM flap recon, but I don’t think it would ever be possible to prove whether there’s a link or not.

How lymphoedema behaves very much depends on how well, how often and how early it is treated. Untreated it almost invariably gets worse. Prolonged, appropriate, treatment by well qualified practitioners (manual lymphatic and compression bandaging) and a timely diagnosis can work wonders in bringing the swelling down - this is the ideal scenario, but it doesn’t always happen. The fact that you have been referred so promptly is encouraging and hopefully a sign that where you live the lymphoedema services are reasonably funded and on the ball. The onus is then on the patient to do their bit and keep it down…and this is the tedious part with daily self-massage (and exercises, too), skin care and sleeve-wearing. A well-fitted and conscientiously worn sleeve will maintain any improvement brought about by treatment, but is unlikely to reduce an arm much by itself. The compression in the sleeve aids the flow of lymph back to the body, btw (But losing weight and cutting down on alcohol can also sometimes help to reduce lymphoedema).

Yes, taxotere is a so-and-so, isn’t it? I’m nearly five weeks on from the last one of six and my arms are only now starting to feel better and, I think, go down a little.

Let us know how you get on, won’t you?

X

S

I had a lumpectomy 11 weeks ago, still not quite healed so haven’t yet moved on to chemo, rads and hormone therapy. My arm was fine - until I slipped over and landed on it. It totally seized up and although it is now a lot better it isn’t right. Is this lymphoedema?

The pain feels as though it is muscular (the upper arm nags all the time and hurts when I try certain movements; my husband says the muscles being used on those movements are shoulder muscles but it definitely hurts in the muscle of the upper arm). The upper arm is only slightly swollen - I had to get a tape measure to be sure! I’m doing the exercises but should I stop when it hurts? Should I be going to my BCN for a sleeve or massage or whatever?

Happy Christmas
Ruth

Dear Ruth

Welcome to the BCC forums, in addition to the valuable advice you will receive here, the following link will take you to a publication which you may find helpful to read:

breastcancercare.org.uk/docs/bcc_lymph06_0.pdf

You are also welcome to contact our specialist nurses if you feel it would help to talk things through, please call our helpline on 0808 800 6000 weekdays 9-5 and Sat 9-2.
Best wishes
Lucy

I would speak to your bcn for advice. You def don’t want to have massage yet coz if its lymphoedema the wrong massage could make it worse.

I agree with Lynni, Ruth

Best to push for an appt and assessment by a qualified lymphoedema practitioner asap by the most efficient route GP/bcn, etc. And in the meantime, keep up the lyphoedema prevention strategies that they’ve given you.

I would also think it is best to stop the exercises when they cause you pain. After all, you’re getting over an op, not training for the Olympics.

There’s a lot to be said for inti-inflammatories - have you tried taking them continuously for a few days and seeing if you become more comfortable?

X

S

Thanks - will ring the BCN tomorrow. Feel a bit silly - compared to other people’s problems mine seems quite minor. It was such a stupid accident; but not being able to push a door open or reach for a newspaper that’s fallen on the floor is really getting me down.
I did take Dicloflex for a few days, perhaps I should start taking it again.
Ruth

Hi Ruth

You’re not being silly - not being able to use your arm properly is a genuine problem.

BTW, I take diclofenac, too, topped up with co-codamol or paracetamol if necessary.

X

s