Hi
Has anyone experienced extreme pain in the arm you recieved your epi mine feels as if its about to explode the pain is unbarable.
JOANNE
Joanne I have never heard of this - you need to see someone straigt away… if I were you I’d go to A&E NOW !!!
don;t want to worry you but I don;t think this is normal so the sooner you see someone the better
good luck
let us know how you get on
love FB xx
Joanne,
Do you have a 24 hour pager number for your chemo unit, because this is a use it situation, I have rung mine 4 times before now. I agree with FB do something tonight, 24 NHS will chat it over too, it could be phlebitis (veins infected) or maybe a clot if swollen.
Do it for us
Lily x
looks like Joanne might have gone to get it checked Lily ? Hope so . I’m off to bed now - night night - love FB xx
Let us know Joanne
Hey Joanne.
My arm has been aching but it’s more of a dull internal bruised feeling. On the day of the dose I do get horrible cramping pains a few hours later (yuk, that will be later today) but it does sound like you should phone the chemo nurses and do what they say.
Most chemos irritate the veins and can be extremely painful for weeks after finishing - oh prophet of gloom - sorry
The chemo nurses should have told you that this type of pain is common with epi and other chemos. They should have told you this when they were giving it to you and you should have had written info about this so you were not put into this scary position
Epi caused me huge amounts of pain for the 6 I had and I couldn’t fully straighten my arm for a few weeks after finishing the course. - oh dear - now I’ve depressed you all further!!
My take on this situation is -
If the chemo had leaked, then you would see bright red areas and tends to happen straight away and you need urgent treatment.
If it is a blood clot then your arm goes funny colour and is painful and sgain needs urgent treatment
If it is phlebitis - inflammation of the vein, is caused by an infection or just the irritation of the vein by the chemo and can be red and swollen but I had nothing to show at all with epi but no-one could touch my arm or I’d scream in agony and was very difficult with the children who were then 5 and 8.
Whatever the cause, phone your chemo helpline which you should have access to 24 hrs a day and in my experience are always helpful and happy to see you even if they think it is just a normal but painful side effect of chemo.
A tip that might be useful, is that I used to find using warm wheat bags would help the pain in my arm at home and when I was having chemo, I always had that arm wrapped in a heat pad and that helped with the pain when it goes in as well.
Sorry if this post sounds angry but I am - I’m angry on all your behalves that so many of you are not given the right info about side effects of chemo and have to find info from forums which the medical profession should be giving you. What would we all do without these forums? I have very advanced bc now but I think the reason why I’m still here is that I’ve accessed these forms to get advice and comments and hear what different types of chemo people have had and their side effects and then sadly info re secondaries has been very useful and supportive here on site.
I’ve been using these forums for 3 years now and the same questions come up again and again and it’s all to do with poor hospital communication and makes me so angry. I will fight my corner and not afraid to challenge the medics etc but when you are feeling low, scared and vulnerable due to diagnosis and starting chemo, not everyone can do this and why should they when especially when they should have explained something to you.
Good luck to you all - sorry for rant but it upsets me to think you are all so scared and your anxiety could be relieved if the medical profession communicated better. Saying that, the most useful thing for me and where I get the most support and answers has been the forums as often people can have an unusual side effect of a drug and if you ask the question here then often someone else has had the same problem and it’s brilliant for offloading ffeelings and getting support and knowing that others are having the same sort of rough time. Long live the forums and hope for everyone here your treatments go well.
Kate
Hi Kate
I agree with you totally on the standard of communication. These forums just highlight how ad hoc and patchy information is. As you say, if you are feeling strong and can challenge the medics, all well and good, but for most of us, we are too weak and tired to do so constantly. When I had surgery, my surgeon said I need radiotherapy. My oncologist said it was my choice and I was sent away with a scabby little leaflet on radiotherapy to decide what I wanted!! I would have got more information if I was chosing what hair colour to have!!! Luckily, I am used to research and spent the whole weekend looking up research papers on the pros and cons of radiotherapy. At the time, I thought how many other women would be able to do this and be left completely lost as to what to do for the best. These forums are brilliant and so are the helplines, but there must be women out there who have no access to these forums either. What about them? I am doing an MA in Health Communication and its my goal to have medical schools make communication a priority. As you say, long live these forums.
Cathy
To be fair to my nurses they did tell me that it will harden the veins and that it will hurt, although not as much detail as you shared Kate, Thanks for that.
I’ve just had 3rd FEC and this time I insisted that they use the other arm to give the right one a break (both arms are affected so there’s no good arm as such) and did use the heat pack as I did the first time, this helped immensely. Nurse also suggested rubbing moisturiser into the arm which I will be doing.
I think they don’t want to scare us too much. One of the chemo patients was having a reaction today and they had to call the doc in for him, poor bloke. But the nurses all stayed calm and you could tell they were trying not to worry the rest of us… they’re really very sweet.
Joanne are you ok? where are you? please let us know … hope you are ok love FB xx
Thanks for the info folks - hope Joanne is ok I had terribel pain in my arm last week - as id the whole underside was inflammed. I have to say my chemo helpline was brilliant - I should have runf them earlier instead of ‘being stubborn’ and waiting - luckily the bloods were good and there was no infection. Just as you say the chemo has irritated the arm - its better now but am dreading it getting worse next time. I can only have the chemo in the one arm - But i do agree that this side effect is missing in all the info i was given. So a big thanks for your info my mind is easier.
Leesha
Dippykate,
thank you for still finding the time to help us all out. You may not realise how much comfort we draw from all you ladies out there that have walked this path before us and still find time to offer advice and support. You fill in the gaps that the docs leave, so sensitvely and make this forum what it is.
Bless you
Lily x
Hi: Last time I had my epi (no 3 - 8 July) the nurse did the epi then the steroids (usually other way around) - she said the steroids washed the epi thru the vein and softened the vein. Nurse friend said steriods act as anti-inflammatory. No problem so far - particulalry pleased as she had to use surgery arm as other one was inflammed from previous epi. Have appointment with Onc on Monday and will ask if this works and if so why they don’t all do it that way.
One of my big complaints (one of many!!!) is the way we are bombarded with info when our brains are not working and our stress levels mean we are somewhere north of Saturn. I am fed up with being told something and saying “what pills?” or whatever and the nurse saying we talked about it before (during the two hour!!! conversation of which I remember about ten minutes!) “Well I know I ticked the Box” - Oh boy she should really not have said that! (I think I have used a year’s worth of exclamation marks here but it makes me so mad.)
Going back to the vein thing, no I don’t remember being warned about the tightness and the pain, but I guess that box is ticked too. I think it might help if some of the nurses, whatever, had actually had this disease and were not just talking theory.
I will shut up now and get back to work.
Hope all is well with you all.
Luv
Julia
XXX
Joanne,
How are you now?
Lily x
Hi Joanne and everyone,
I’ve had two epi’s now and my arm is really sore, so am glad to have found the advice on this link - thank you all. I was told to expect some discomfort but when I mentioned the pain at second epi was told it was ‘only’ nerve damage ?? Am going to ask for steroid to be put in last next time … anything to try to stop the discomfort. Will this pain go away when chemo has finished?
Hope all is well with you Joanne?
Shelagh
Hi all
Thanks for all your replys
I have phlibitis and its bloody sore even though i told them at my last epi they still insisted in putting it in even though it took them 2 and half hours and a lot of tears and pain. My arm started turning red and when i asked about it they said they didnt know if that should happen bandaged it up and sent me home with the result that i now cant bend my wrist or straighten my arm
iam calling them in the morning with regards to hickman line or similar so wish me luck.
Joanne
hi, so sorry to hear you have been in so much pain. I think you are on the tact trial arm 1 same as me. At my hospital they put in a PICC line at the beginning and it has been great because of so many treatments. I have really had no pain or problems with it and I think this should be made standard.
good luck Lynda
Hi,
Joanne I had been wondering how you were, sorry to hear it is still sore, sound horrible. The line is a good idea, I have a port, which is similar but is buried under the skin of my chest so does not have to be bandaged over or flushed. Check out the pros and cons of each as some you have to even be careful when showering. Pick the best option for you. Hi Lynda I am on arm one too, how far along are you? I am having epi 4 on Tuesday and starting to get anxious about changing to CMF and going 2 weeks in a row. Joanne I think you are just behind me aren’t you, or have I muddled you with someone else?
Hope you feel better soon Joanne
Lily x
hi, you are up late too, we have spoken before. I have had first round of CMF and due for second round starting this Thursday if bloods ok then only 2 more to do.
I was worried about the two lots and when you go in for the second lot it seems strange to be going back so soon but its ok. have been feeling more tired and very achey. On the plus side I’m not eating for England anymore and I do not have that horrid taste in mouth.
I try not to think about the treatment too much just take each day as it comes.
With my Picc line I cannot get it wet and have to go to hospital each week to change dressing and get it flushed, its in the top of my arm so I have not been wearing any short sleeves which is not a problem as I’m cold all the time and theres not much sun anyway.
take care Lynda