Just wondered if anyone else has considered getting a medi-tag to warn medics that they are at risk of lymphodemia? Someone mentioned about carrying a card in their purse stating that no needles or whatever should be used on their at risk arm … but quite often I go out without my bag or purse so thought a medi-tag might be a good idea.
I’ve had a tentative look this morning and all the pretty jewellery costs a fortune… possible birthday present idea for the family. Lets hope the proverbial bus does not run me over until after my b’day in August.
Yes I had also thought about it but not done anything about it!!!
Shouldn’t medi-tags be provided free on the NHS if there is a risk of lymphodemia? Prevention being better than cure.
Perhaps I’ll also have to go down the birthday route but another 5 months to wait in my case - so have to take even greater care where buses are concerned
The lymphoedema support network (LSN) have been selling armbands similar to identity bracelets worn when in hospital. A pack of these are quite reasonably priced, but obviously you don’t want to wear one of those all the time on the off-chance you may need it!
As a member of the LSN, I have been issued with a card (the same size as a credit card) saying that I have the condition and to leave the affected limbs alone. A similar one stating that you are at risk of it and that the same precautions should be applied would be a good idea although I’ve found that although bcns and lymphoedema nurses are well aware of the dangers, other health professionals are not nearly so well-informed and in the past have attempted to convince me that anything they did with that arm would be perfectly safe.
It’s a worry, I admit - all the time we are conscious we can stand our ground and make sure they use the other arm, or a leg, or even the neck or groin, depending on the procedure, but if we’re having a general anaesthetic we’re incredibly vulnerable.
I have had my arm used frequently without problems as the veins on my good side are now useless and I suffered a chemo burn to the back of my hand 12 months ago, meaning that can’t be used for anything either. I have had bloods taken, blood pressure done (although I find this uncomfortable), the injections for the MUGA scans and most of my Herceptin done on my “bad” side. The surgeon I am under does not believe there is enough concrete evidence to support the risks and when I spoke to the oncologists about it they said they felt the same (it was my onc who approved for my left arm to be used). The hard and fast rule of course is on no account is the bad side to be used for chemo treatments.
When I spoke to my BC nurse she said a lot of the surgeons think the evidence can be a bit circumstantial - sometimes women get asked if they had an injection or blood taken prior to the swelling and they reply yes. I am nearly 2 years post surgery and am very particular about keeping my arm exercised; I was told the easiest way to develop problems was not to do this and my surgeon told me he sees many women with swelling and mobility problems who didn’t do the physio. My BC nurse’s mum had surgery in the days before women were told to exercise and she apparently has lymphodoema problems and poor mobility.
I have to say I am deeply envious of your good fortune - lymphoedema is such beastly lottery. I developed it in one arm 3 years after cancer sugery and about 9-12 months after the recon. Having taken every precaution known to man (or woman!), including exercises - I have perfect mobility in both arms - I then developed it in the other arm following a second cancer. My oncologist arranged chemo through a Grouschon line (because both arms were compromised) in my chest, so I’m not sure what triggered it - rads of course are a risk factor - but I think the problems may have started after a rather rough mammogram.
I’ve got used to ‘training’ nurses and doctors to take BP on my legs and blood from my feet over the years. It’s amazing how many have never done it!
I’m afraid I can’t say I’ve found either surgeons or oncologists particularly knowledgeable about lymphoedema. I get the impression that if it isn’t operable or there isn’t a drug for it, they’re not terribly interested. (Perhaps things are changing…?)
I’ve just got up (Monday morning!) and I feel I need to add some more. Cherub - I am really quite concerned for you. I can’t believe your surgeon and onc feel that using your ‘bad’ arm is a good idea, as it flies in the face of accepted good practice for avoidance of, and research into, known triggers for lymphoedema. I’m really pleased you have had no problems so far, but I do feel it is tempting fate to carry on.
I really have had little choice because the veins in my good arm had collapsed by the last cycle of Taxotere, which was how I ended up with a very bad chemo burn. Taxotere punctured the vein in the back of the middle of my hand and it started to blister 7 days after it was administered. 3 days after that my hand looked like something from a sci-fi movie and I was also neutropenic. Thankfully I finished Herceptin about 2 months ago, so no need for more needles at the moment.
I have never had good circulation and suffer from very cold hands and feet - the one attempt I had at using one of my feet was absolute agony and had to be aborted. I did not at any point want a line put in, but my onc only uses a line as the very last resort and said if I was happy to struggle along she was fine with that. I’m under one of the best cancer centres in the country and have no reason to believe the medical team I’ve been with are not clued up on lymphodoema. I also have a relative who is a very senior Prof at another cancer centre and he used to work with this team; he assured me I was in excellent hands.
Whilst I take the utmost care in every other way, I really believe that if I’m going to get it then I’m going to get is as it is so unpredictable. Even before I had BC I was always very meticulous about things like the possibility of getting an insect bite or something and always took care to wear repellent. I have also never gardened without gloves on.
It is good to hear that you are in the care of one of the best cancer centres in the country, as this must give you great peace of mind and the treatment of this horrible disease is of course the overriding issue here.
I agree that having blood taken from a foot is painful – but this can be minimised. Did anyone offer you a local anaesthetic? I also get someone to soak my feet in a bowl of warm water prior to using them as this makes the veins easier to access. I also tell them to use a smaller cannula than usual, as this also makes the actual insertion less painful. (I, too, suffer from poor circulation, Raynaud’s in fact). All this takes time, I agree, but I see it as vital.
I have to say I was pleased to be offered a line when I was having chemo, as it removed all the hassle from taking bloods and speeded up the whole procedure each time I went.
A few years ago I obtained a brilliant booklet co-written by Prof Neil Piller – one of the foremost lymphoedema researchers in the world – and it’s been my lymphoedema ‘bible’ ever since. If the Prof has said, don’t do it’, I don’t do it!
Finally, back to the Medi-tags. I think Westside Sure has said on another thread that she was advised to carry a piece of paper in her purse threatening legal action against anyone who used her ‘at risk’ arm! This could be a good interim measure, too.
Hi all – like Pinkdove, my lymphoedema developed completely unexpectedly many years (ten!) after my lumpectomy + axillary clearance. I had exercised (it’s my left arm, and I’m left-handed), but also allowed bloods to be taken from my “affected” arm because my right arm has difficult veins. Since lymphoedema struck last year, I have my bloods taken from my right arm, in the chemo suite at Christie’s rather than the bloods room, as they can use those smaller butterfly cannulae and find veins in my hand – usually a long wait, but I only see my onc team every nine weeks, so it isn’t too problematic. I think if both my arms were affected, I’d ask them to take bloods from legs/feet instead, and would have a port fitted if having IV chemo or Herceptin. My lymphoedema is currently not too bad – I have full mobility – but this condition is full of surprises, and I understand that it could worsen suddenly.
Thanks Lilacblushes for raising the issue of getting (and wearing/carrying) a medi-tag or card with lymphoedema info – something I just hadn’t thought about. And thanks Dawn & Bahons2 for info about the Lymphoedema Support Network’s services – I’ll be joining them to get my card.
I should have added that I now have a portacath (for the past 4 years nearly) because of the state of my veins so unless I’m having a CT scan with the contrasting dye I don’t have to go through the procedure of trying to find a vein.
I think a small credit card with info on it would be great - I’ve got one for my portacath which I keep in with my other cards.
i was told by my oncologist that no way was blood to be taken from my affected arm ,i have it quite bad in my left arm after having my mastectomy and chemo also rads i think if you have bloods taken the risk of infection can make the condition worse. they do have great difficulty taking bloods out of my other arm something i dread as having regular ct scans on liver secondaries . i think having a bangle would be a great idea .they could be just like the cancer ones that dorothy perkins were selling .i make jewellery my sel so maybe i will have a think about how to construct one …lynn x
Good thought, aroma - the LSN ones are a bit “medical” for everyday use (though maybe that does make them more spottable).
Perhaps something like the information on one of those plaques you can get to put on dog collars with a beaded bracelet to pretty up the rest. I’ll have to talk to some of my beading contacts!
I found a company on the internet who do necklaces and bracelets for medical info - they have some pretty ones with beads. If anyone wants the link let me know and I will pass on the link. Some of them are a bit pricey but they do have a couple at a reasonable price.
Not sure if anyone is aware of another site. Although it’s American they export to everywhere in the world - not sure how they compare price wise but they have loads of different choices from watches, bracelets and necklaces.
I was looking for something else on the net (to do with diabetes!) when I came across it, if you google Lauren’s Hope you’ll get more info.
I thought that would be a sensible situation but my onc reckoned in the unlikly event of you needing to make use of it , ie being unconcious then the chances were you would have much more serious things to worry about (in the grand scheme of things) Obiviously then there is also the question about ladies who have had surgery on both sides. Im sure there shoud be some thing to put our minds at rest.
