Vein pain and Picc line ?

Hi  and sorry to hear that you’re still struggling - it’s nasty stuff isn’t it? I think I would really push for a picc line if you can? I was told that they would use alternate arms for mine but that isn’t an option for you so your poor veins on that arm are going to take the full brunt of it. There is always a risk of blood clots with a picc line and that is why it is flushed inbetween sessions. Have they explained what the risk of complications is?

The touching of cold things does wear off after treatment ends but it’s worth keeping a diary of your side effects and how long they last as a slight reduction in doseage can often really help. If you start to get tingly hands and feet then you must mention that to the nurses as that can continue to get worse after stopping treatment and can sometimes be permanent.

I don’t think there is anything you can do to heal your veins - mine were rubbish by the end of it all! - but make sure you’re well hydrated and your arm and hands are nice and warm going in to your next session.

Finally give yourself a big pat on the back for getting through number 1!

Take care

Karen x

Thanks Karen.....I think it was the blood clot risk....and also infections......do you mean tingly hands and feet all the time...or just when touching cold things and cold water...mine seems to be touching cold things now...although they were tingly all the time for a few days....also....my nose is tingly and sore all the time...I keep covering it..then uncovering..that is hard to cope with....can't keep it warm...even when warm still hurts....Its not as if I have a big nose !!!!!! 

Hi . I think the cold touch tingly is part of the course it’s the peripheral neuropathy which is pins and needles in the hands and feet which can be permanent. The nurses should check your feet for redness but they didn’t check mine until I mentioned something and then immediately stopped me from having my last session. My feet still feel like I have chronic sunburn and the skin feels too tight 4 years later - not life changing but annoying all the same! The cold touch tends to be worse after the infusion then lessen a bit towards the end of each cycle. There’s been a chilly wind here recently which won’t be helping you. Have you thought about a balaclava? ......sorry!
I was told that the cold touch etc. was caused by the chemo getting right to the nerve endings so I tried to see that as a positive that it was getting to all the far corners of my body. 
Hang on in there - you’re doing really well - keep ticking them off x

Hi Davisio,

I found the cold intolerance lasted 7 to 10 days each cycle. The tingling seemed to last longer each cycle and I still have the tingling in my toes and on my tongue, less so in my fingers (I've just finished my 6th cycle) No one has ever asked to look at my feet, but they look normal to me.

I had a PICC from the 2nd cycle ant it certainly made a big difference to the vein pain. My 5th and 6th infusions were at 75% which also helped with other side effects. It may be worth asking if there are any other options available?

I hope they can find a way to ameliorate your side effects.

Best wishes 

Thankyou Sal......it always helps to hear how other people are getting similar side effects..and how they cope....it sounds awful to  say that...as you don't wish this on anybody...but it makes me feel less alone...Thankyou ...

Thankyou Karen...for always replying to me...I do appreciate it ...Irene x

I have had three picc lines but have now had a port fitted. The port is much, much easier to manage and I would heartily recommend it. I wonder whether you could have one? You can swim in the sea with a port whereas a picc line cannot be immersed in water, making swimming a no no and showering difficult.

x

Thanks Jasmine....not sure what a port line is...will look it up ....I found the second round even tougher than the first one....much more tingling and numb toes....throats spasms so bad.....I was braying like a donkey trying to get my breath when they took the cannula out.......I couldn't move throats muscle to swallow anything for a couple of days...also had chest pains...told to ring 999.... ambulance came out...didn't want that...just wanted to know if I could stop tablets for a few days.....but they said my heart rate was very low...and blood pressure high...so had to be carted off to hospital....where I was monitored overnight.....not taking tablets....felt a bit better...so they decided heart was ok.....nurses wanted to take blood samples...but made a right mess of veins in my hand....as they couldn't find one for blood...I had to stop them as my hand was blowing up....that's distressing in itself...as they needed blood to see if I was  at risk of heart attack....a very nice nurse came along and assured me she would do it ok....and she did! So relieved.....why is it some nurses can do needles well and others can't? Sent home to carry on with the same dose.....but I am trying desperate to get oxyplatin dose reduced....the the pain in my arm is not receding at all...after 8 days...and my toes are worse....also....can hardly walk...muscles seem to have gone in my legs....very shaky...does anyone else get this?also....burning sensation in my bottom!!! Especially when emptying bowels...is this normal? I have one more session to go...maybe that's why they won't let me have a pic line....I am on 3 sessions...and then radio/chemo ....all this before any surgery..they say..to reduce the tumour......it seems like it's all doing so much more harm than good.....sorry to be moaning again....but it helps to talk about it on here....oncology nurses just keep saying..." you're getting gold star treatment "  haven't been able to get an oncology appointment with the doctor before next round....she is just to booked up...feel too drained to do anything about it.....also....keep losing my voice...so can't talk on the phone....I have a hiatus hernia.....which seems to be worse....I'm taking Lansoprazole ...and sometimes gaviscon....not helping much..... Irene.

You are having a really torrid time with side effects, they sound really severe. I had shaky legs but it only lasted for a few hours after the infusion, not days.

So sorry that you are having such a difficult time. 

Oh no it sounds like you are having an awful time with it all. 
Definitely keep a note of all your side affects. Do you have a call with the chemo nurse/technician before you have your chemo that week? Let them know all the side affects you are suffering, don’t pull any punches, they really want to know everything. 
I’ve just finished my 12 rounds of Folfox and through the course of it my dose was reduced to 75% and the oxipalitan removed. It’s the oxipalitan that causes the sensitivity to cold and nerve damage, but from what I understand is the best at zapping those pesky tumours.

All I can say, is communication is the key, tell them everything and they will arm you with ‘stuff’ to combat the side affects.

All the best, Susan x