Couldn't agree more, Shelagh. I had a line a few years ago and it made life a lot easier. I've now got a Portacath and it's even better.
It was put in whilst I was having surgery some months earlier (so someone obviously planned ahead!), risk of infection virtually nil, veins all spared trauma, invisible to the naked eye, what's not to like?
I can even swim if I want to. I thought a little while ago that it might have shifted position slightly, but it was checked and pronounced OK.
I hope the person who invented/developed it was suitably rewarded!
I've insisted on having blood tests from my foot since the veins in my good arm started to be painful - I wanted my hand and arm left alone for chemo. Some nurses just do it no problem and others make a fuss and insist on getting the doctor.
I had the first 4 chemos (Epi) done in my good arm (or what was my good arm!), and the last two (CMF) were done in my bad arm (3 lymph nodes removed) because CMF was not expected to harm the tissue. However the two in my bad arm took ages to 'bolas', so I've now had a Hickman line put in - on Tuesday. I feel relieved that for next week's chemo I won't have to worry about my veins playing the game. I sort of wish I had had the Hickman line ages ago.
Hope this helps,
I had a PICC line in for all my chemo, and for me it was an absolute godsend as it has always been hard to find my veins. It went in just above the elbow bend in my good arm and was never a bother at all, and made life easier for bloods and far less stressful for chemo.
I'd recommend you ask/insist on a hickman line asap. I had a hickman line after my 2nd of 8 chemos and I LOVED it - it was a lifesaver. I got no infections in it, no problems at all - except when it came to be removed and was SO well fixed I had to have another cut made to get it out!
Whilst we cannot protect our bad arm from everything, there's no point in taking needless risks. I have iodine in the house for any nicks I get - and I get some, despite my best intentions. I slap the iodine on immediately and, touch wood, there's been no repercussions. However, I do take care of that arm as much as I can.
Get assertive with the hospital!
All the best
Actually Bahons you raise a really good point there. I always carry antiseptic wipes with me (I have a dog it's wise anyway) so I can deal with any scratches etc and I'm careful to wear long sleeves when working in the garden etc. None of that was suggested to me by any nurses or doctors that I recall though so I totally agree that a LOT more training is needed re lymphoedema.
Hi, I would agree that you should be very careful with your bad arm. Don't want to develop lymphoedema on top of everything else. Perhaps they can fit you with a line or port - do ask before your next session. I had total clearance as I had a recurrence and no lymph nodes left at all, plus serious under arm scarring, and have slight swelling on upper arm and chest wall. So I am extremely careful now - don't want the swelling to 'travel' down my arm as I don't have to wear a sleeve at the moment. I swim a lot and wearing a sleeve would be such a bind, that I do everything to avoid any further problems.
Hi all - didn't want to appear as if I were shouting - sorry - I feel quite quite passionately about this subject and hope I haven't upset anyone.
Vertangie is quite right when she says we cannot wrap ourselves up in cotton wool for the rest of our lives and no doubt we have all had, or will have, bites, stings, cuts and scratches on out 'bad' arms. I have, and I've cleaned the wound, slapped on antiseptic and never had any trouble. It's a risk we have to face in our everyday lives. But deliberately piercing the skin is, for me, a totally avoidable risk, one that need never be taken in the first place, which is why I am so dead set against it and why I think that all healthcare professionals should be trained to think the same way.
There are people who have had only SNBs who have gone on to develop lymphoedema - there are others who've had the whole works, full clearance, radiotherapy, etc who haven't - it's a rotten, cruel, lottery.
Scared, you are lucky to have a surgeon who is so clued up on lymphoedema. Whatever you decide to, I wish you well.
sounds like you were very unlucky lizzy2. or I'm lucky.
Of course the number of lymph nodes each person has varies massively and also how much damage was done removing them will vary too so it's quite possible that 1 person will recover a lot more lymphatic movement than another ie I've had 6 doses of full strenght FEC with no problems and another person could have had just a lymph sampling and have only a couple of nodes left in that side and get lymphoedema from something as simple as a mozzie bite. You just don't know how your luck will fall with this stuff so if in doubt you should probably play safe. I'm sure age will play a part in recovery after surgery as will your general state of health.
I too have bad veins and having chemo was a nightmare, towards the end when the nurse just couldnt get a vein they asked if they could use surgery side, I said yes and have regreted it since, a month later I developed lymphodema in that hand, I am sure that is what did it. I should have said no but having been there for over an hour and as you know it is painful, I gave in, as someone said once you have got it thats it, listen to your surgeon.
ps I only had a few lymph nodes removed and lumpectomy, good luck
Bahons2 makes a good point about hickman lines costing money and that could be an option for you if you have a few left.
But for the record I was NOT pressurised at all (sorry we seem to be shouting for some reason) and I did NOT want a portacath etc as I personally felt that would be more surgery and risk of infection in itself. It is impossible to live in a bubble and how are we supposed to avoid getting any cuts or grazes or insect bites in our lives.
However you should avoid all that you can so a line or port might be a good idea as you've have full clearance (as I said mine was a sample so I still have some lymph system in place on both sides). A few people on here have them and have been fine with them.
For the record I did insist on them using the small needles for bloods though and straight after surgery I was hooked up via the foot, lets just say that didn't work well for me.
My veins play up all the time as my good arm is my bad arm for finding veins. If you can follow that. Used to get blood test taken at doctors but chemo nurses take it now with a finger prick (like blood doning test) They then take additional test (for trial) once cannula id fitted to back of my hand. One of the other girls had trouble and they fitted her with a PICC line an she has no trouble now.
Hope this is of some use
Your surgeon is right. There is NO NEED for anyone to touch your bad arm.
You need to have a line (Hickman, Picc, Portacath) put in - asap.
It's all very well your bcn telling you to 'report' any swelling - if you get swelling, it's too late. Lymphoedema is for life - and there's no cure.
The risk of developing lymphoedema when using needles does NOT arise because the needles are dirty. They obviously aren't. The risk is there because any break in the continuity of the skin offers an opportunity for airborne infections to enter your lymphatic system/blood supply. And until and unless chemo is delivered with you in a sterilised bubble, that risk remains. Your immune system is already comprised in that arm because you have no lymph nodes and it would well having trouble coping and swell and you could develop cellulitis as well. It's asking for trouble to pierce the skin and leave a wound.
There are lots of people on here who have had their 'bad' arms used with no ill effects. But no-one can yet reliably predict who will get lymphoedema and who won't. Personally, I wouldn't 'twist the dragon's tail' by giving lymphoedema the slightest chance to pick on you.
I have lymphoedema in both arms, by the way - they take blood from my foot, soaking in it warm water first and using a smaller cannula if necessary.
Don't be pressurised into doing this 'their way'. It's not worth it. Please, insist on a line. It costs money, so you're not going to be offered it as a matter of course, but it's your health and future quality of life that are the issues here.
With very best wishes!
Have you considered having a hickman line put in? My veins collapsed after second chemo and i had a line put in, but i had a lot more sessions than you to finish so it may not be worth it. I had node clearance and did have a blood test once on my bad arm, but the chemo nurses are so careful, and i didnt develop lymphoedema.
As I had bilateral mastectomy and some nodes take in both arms I have no "good"arm and have had 4 doses of chemo through my right bad arm, and 2 doses through my left bad arm.
It really hasn't been a problem at all as the risk is from infection and the chemo ward has to be unbelievably clean and they are experts at it.
My chemo is all done now and there's been no trouble from lymphoedema at all but then I did just have a sample taken rater than full clearance.
I'd go with what the chemo nurses say personally.
I have had 3 lots of chemo and have 3 more to go but the nurses are having trouble taking blood and also doing the chemo in my good arm. I had all my lynth nodes removed and was told by the Surgeon that I was not to have needles in my bad arm ever again. However the Chemo nurses are saying that they may well have to use my bad arm but I am so worried about developing Lynthodema. I have spoken to the Breast Care Nurse who has said that if they have to do this then just to keep a watch on any swelling and report this immediately but that doesn't reassure me.
I have been told that you can have your blood test done in your foot but wasn't sure if this was true and then try to keep as many veins intact in my good arm for the chemo?. Any advice would be more than appreciated