Well do they ever improve after chemo and if so how long does it take?
I have just been to have a blood test, what a clinic, i waited over an hour to go in.
They are so short staffed.
The first woman to try and get blood tried 6 times, I was almost saying take it from my other arm i dont care. However she was clued up and said they couldnt for at least 2 yrs if lymph glands have been removed and even then are suppose to avoid it.
Usually needles dont bother me but she tried to get blood from the vein in my hand that they always used for chemo, gosh it was horrid i felt like i was going to be sick.
Eventually this man got some blood from the same vein in my hand.
I know it was only a blood test but i dont think i will ever ever agree to one again.
Interested to know how others cope.
Rx
I’m 3 years down the line and it’s still a bit difficult to get blood out my veins! Thankfully, all the staff at my hospital are used to dodgy veins so they usually get it first or second time. I’m sometimes tempted to offer up my ‘good’ arm, but I just try to think of it being a few minutes discomfort and this outweighs the risk of lymphodema.
R, I’m afraid I can’t help with your first questrion as I’m still in the middle of chemo. Like you, before chemo needles didn’t really bother me, although I prefer to look away when it goes in! Anyway, the phlebotomist has had trouble getting blood out of the veins in my arms at the last 2 pre-chemo blood tests.One time when I wouldn’t bleed I had a “funny turn” and almost fainted.I felt awful, ugh! Then the following day at chemo it took three attempts before the nurse could get the cannula into my arm. Now I’m getting a bit of a phobia about blood tests and needles. They did tell me that I have very fine veins and that obviously the chemo makes matters worse. Last time I tried to warm my arm up with a hot water bottle but it didn’t help and in fact the phlebobomist ended up using a much finer needle in the other arm (I haven’t had surgery yet so they can use either arm).
Let’s hope we both have a better experience next time!
LR x
I had chemo 5 years ago for breast cancer and my veins weren’t to bad but I got ovarian cancer last year and was in and out of hospital loads of times so lots of blood tests and cannula’s for drips. I was told not to use the breast cancer side for 5 years but in the end they had to. Still having regular blood tests and will do for the foreseeable future so I hope this arm doesn’t cause any problems.
Toddy
Dear Liverbird - and all of you. How rotten it is to have blood tests when the blood just doesn’t want to come! Thought I might just add my six penneth worth here - with my former lymphoedema nurse hat on. Once someone has had lymph nodes removed blood should not be taken, nor injections given, nor blood pressure taken, from the affected side - there is no time frame that expires on this . (The feet can be used if necessary). I not infrequently saw ladies who, for example, had a flu injection in their affected arm after many years and this could be enough to trigger lymphoedema. There is lots of lymphoedema advice about, either on this site or from the Lymphoedema Support Network. I fully realise that is no help at all for those of you struggling to get some blood out, but it really is worth holding out against using the affected arm, unless like for you Toddy it really is totally unavoidable. Good luck all of you, and hope the next time it is easier for you. Sarah x
I now have a portacath fitted but that’s because I’ve had 3 different types of chemo over the past 13 years and they tend to only think of putting a permanent line in if you’re having regular treatment. Sometimes they will consider a Hickman line or PICC line.
You should never offer your other arm - even 2 years post treatment so I’m afraid that lady who gave you the information was misinformed. I developed lymphoedema two years ago (11 years after initial diagnosis) and that was because when I was pretty ill I wasn’t really aware that they had taken my blood pressure on my wrong arm and then got the lymphoedema.
If the nurses in the chemo clinic think you’re having real problems they will discuss it with the relevant other staff. I always used to have problems as I’ve got ‘dodgy’ veins - they used to move out of the way as soon as the needle went in! I used to come out with at least 5 different plasters on the back of my hand!
Pinkdove
P.S. - glad to see you posting again Sarah - how’s the chemo going? - I think I’ve just reinforced what you’ve said as well re the lymphoedema! I’ve always been told never to give my wrong arm.
For what it’s worth, I have been given a totally different story on using the side where the lymph nodes have been removed. My 2 oncologists and my surgeon have all said the only thing you can’t do on that side is have chemo administered. I am unable to use any of the veins on my good side as they have all packed up with chemo; the back of the hand on my good side is out of the question as well as it suffered a huge chemo burn last summer.
I have had 11 Herceptins on my bad side and have had the injections for the MUGA scan done twice there. I have also had to use it for giving blood samples. The team of doctors treating me have said there is not enough concrete evidence to suggest using the side where the underarm has been cleared causes lymphodoema; my surgeon told me what often happens when women have arm problems is that they get asked if they have had an injection or anything into that arm and if they answer yes, 2 and 2 gets put together. I have a relative who is an Oncology Professor and he told me the same thing. The only thing I am not keen on is having blood pressure done as it’s too uncomfortable.Touch wood, up until now I’ve had no problems; only one MUGA scan and 2 Herceptins to go.
I too got told not to even have blood pressure done on affected side and I’m always hammering this home whenever I go in to hospital for any procedure. One time, I had a general and when I was initally brought round, still extremely dozy, i realised the BP cuff was on my bad arm. I lept up, mumbled something about it being on the wrong arm then collapsed back in the bed and slept for another 3 hours! Even in a drug induced state I still remembered!! I was very annoyed that this had happened though, i told every nurse I met about it, it was all over my notes, the anaesthetist knew about it, I had to lie in a different position because of it, and yet they still put in on the wrong arm
I HATE THE WHOLE VEIN THING TOO!! Isn’t it a nightmare?
I feel like a pincushion at the mo and have bruises on my arm that wont go. I have to confess i offered them my op arm and they got a vein straight away. I had 7 nodes removed but just didnt care about the risks. THe next time the cannula went into my usual arm straight away so i think having one cycle off gave it sufficient rest. It is a pain though and they wont consider Picc lines or anything here. I also feel nauseous when i think about veins. Great isn’t it?!
Good luck
Ruth x
Hi Liverbird,
I thought my veins had gone for good after my chemo - along with weekly herceptin, CT scans , heart scans not to mention blood tests. I dont have a good/bad side but they have given up on my left hand and I now insist they take any bloods from the inside of elbow as it hurts to take when cannulated in right hand.
Go with whatever is comfortable for you.
I can now get my herceptin in a vein that I thought was gone after chemo(now 4 months since last) but its slowly getting better and less painful.
My nurses also insist that I steep my hand for at least 10 mins and leave the toorniquet thing on a bit longer to puff up the vein.
Kate xx
Another good tip is to ask your GP to give you a prescription for something called Emla Cream. It’s in a tiny tube and you put it on an hour before treatment, it’s anaesthetic and numbs the area. You leave it on the skin in a small blob without rubbing it in. I’ve used it all the way through the Herceptin treatments I’ve had done at home and it really does make a difference, you don’t feel that horrible scratch so much when the needle goes into the vein.
Hi everyone. I’ve had one lot of chemo so far and it took 4 goes to get the needle in my hand, two on each side. I’m now pretty worried about the whole needle thing. Eventually the chemo went in on the operation side. I had two lymph nodes taken for sampling. Does this still mean they should avoid the operation side, or does that only apply if all your lymph nodes have gone?
Another question, once a vein has been “blown” (what a horrid term!) can that vein be tried again.
Hi Cryst. As far as your question about the risk of lymphoedema after having just one or two nodes removed. Looking earlier on relevant web sites the answer seems to be that anything that interferes with the integrity of the lymph system could deem the arm on that side to be “at risk”, included in this was having dye to locate the nodes and the removal of one or two for sampling. Having said that, I am sure you would be at the very lowest level of risk - after all, to reduce the possibility of lymphoedema is one of the great achievements of being able to do sentinel node sampling. I only had two nodes removed, but will certainly try to avoid using the affected arm for blood/injecitons/blood pressure etc.
Hi Cherub. Your doctors are quite right, nurses and physiotherapists working with ladies all over the world who have developed lymphoedema following injections in their affected arm (or injuries, blood tests, flights etc) have put 2 and 2 together, and experience has shown these things can be a trigger factor. In UK we have had specialist lymphoedema clinics for the last 20 years, traditionally not an area the medics get much involved with as the treatment is by “physical therapies” - there is no medication or surgery that can give a quick fix. “Best practice” has evolved from these experiences and a quick check on the advice given by all the cancer charities, lymphoedema organisations, Royal Marsden, Cancer Research etc all give the same advice - the affected arm to be avoided for injections, blood pressure etc if possible. It would be great to have better research on this, but ethically not possible to do “randomised controlled trials”. Of course, if the affected arm has to be used it does not mean that person will develop lymphoedema, and hopefully they won’t! Hope this is helpful.
Hi Pinkdove - I always love reading your postings. My chemo is going fine, done with FEC now and had first Taxotere, only two more to go! Hope all is going well with you and your support group, your ladies are very lucky to have you!
Good luck and love to all. Sarah
Hi Sarah
Thanks for your post as well! Having to have emergency radiotherapy at the mo as my spine is active active so doing to daily nightmare of a road to Addenbrookes (for those of you who know what the A14 is like!). Already it’s improved my pain and my last zap is this coming Monday for my neck as I’ve got a little bit there as well.
My husband has taken me all this week so far but am having a ‘girly’ day out with a friend of mine so we’re going to a lovely hotel called The Old Bridge at Huntingdon to have lunch and probably set the world to rights!
Glad you’re chemo is going fine - those last two will hopefully go past quickly! Take care.
Love Carol
xxx
Hi Carol - Great to have an update on how you are, but sorry to hear that you have been going through a difficult time with radiotherapy, and a grotty drive to get there. Glad the pain has eased and it seems to be doing it’s job. Have a fabulous lunch with your friends, and have fun - I always think of you being so positive and optimistic, but I’m sure that can’t always be the case! Big Hug. Love Sarah xx
…can so relate to this, don’t think you ever get used to having bloods taken or having treatment. I have started to get sneaky, arrive 30 minutes early then frantically try to track down a chemo nurse who I know is good to put the canula in, so far the clinic indulges me and lets me get away this, but am a nervous wreck every time.
kiwi
hi
my veins went underground a couple of years ago, so i was fitted with a port which has worked brilliantly. its a device thats fitted under your skin so you don’t even see it. i use it for blood and all my intravenous treatment. but i think its quite a specialist procedure.
hope that helps
Mitsou.
Hi Sarah
Thanks for your post. My pain has subsided quite a bit thanks although this is the first time (having had two other separate radiotherapy treatments over the last 13 years) that I’ve felt the effects of it - hit me on Friday night with slight nausea (nothing too much) and fatigued rather than tiredness.
They’ve put me on steroids to reduce any inflammation (as it’s at the base of my spine and then tomorrow’s one is the base plus the top of my neck). Well, talk about being high on the steroids! The mind is willing but the body isn’t! I got it into my mind the middle of last week that I wanted to paint the stairs and the kitchen (?!) so out we went yesterday to B&Q and bought all the stuff, got home and felt totally shattered! So yesterday was out, went to Lewis’s today for something else, came back and Sunday’s out as well!!! I think it’s a long term project but hey ho!
I am a positive person (most of the time except when it comes round to knowing my scan results, which a lot of us can relate to) but I had a friend of mine phone me last night and half way through she started crying saying she didn’t want to lose me because she’s only got 2 friends so I end up consoling her! She’s a very creative person (when we did our fashion shows for the support group she was our choreographer and I’ve known her for the past 19 years but she’s in a league of her own in the drama queen stakes! I told her she’s got to take her lead from me.
My friend and I had a lovely lunch at a lovely hotel before we went to Addenbrookes on Friday - very refined!!!
Look after yourself and take care as well.
Love Carol
xxx
HI Carol - Well, projects for the future are a good thing, whether long term or short term! Perhaps you can mark the kitchen up in squares and do one a week! Seriously though, I know just what you mean about the steroids, feel you can do anything and brain whizzing with ideas, but getting the body to keep up can be a bit more challenging.
So many people on these forums end up consoling their friends or family, and although it’s really tough when you’re the one going through the cancer, or worried what the future holds, I guess it will always be the way. People who love us are just desperate to hear us say “I’m OK, it’s going to be OK”. It’s a special person indeed who can “stay with” someone who is saying “I may not be OK, I may die, I am scared, I hate feeling this way”…or whatever it is. That’s one of the reasons these forums are so wonderful, people can express just what they feel and be heard. It is wonderful to be supported from people who really understand. Anyway Carol, glad the radiotherapy is helping, and look forward to chatting as we go along! Love Sarah xx
Hi Sarah
Thanks for your post - spot on as always!
I’ve had so many of my friends ring me to see how I am and if there’s anything they can do and you do realise how much people care for you. I’ve got one of them bringing some food round on Friday (even though I told her I’m able to cook but she’s Hindu and she loves bringing me her food - mind you I like eating it as well!).
Still feeling underpowered (which I’m not particularly liking!!) but have to go with the flow. Have got a meeting arranged for next Tuesday to see a GP regarding flagging up secondary breast cancer so I hope my brain will be in place!
The paint is still sat in the garage! I know I will get round to it but the steroids have definitely worn off now (!!) but what the heck!
Going up to Leeds on Sunday to pick our son up for the Easter break as he’s got too much equipment (amps, guitars, etc) so I’m hoping that this ‘floaty’ feeling from the radiotherapy will have worn off by then.
You’re so right that people want to hear what they want to hear and I know that I am lucky that except for this one friend of mine, my other friends and family do listen to me.
Speak again soon Sarah.
Love Carol
xxx