Any similar experience anyone?
I have had three FEC and due to have my fourth chemo next week which will be TAX. After my 1st FEC I developed a clot in my arm and was started on clexane. After my 2nd I got a similar pain in the other arm (the arm the 2nd chemo was delivered to) which got worse when the 3rd was given. A doppler showed no clot but the nurse mentioned it could be cording/tethering.
Anyway the pain is still there, especially on extending my elbows.
I have done a bit of research and there seems to be an increasing link between epirubicin and vein sclerosis, however I don’t know whether the pain is supposed to get better or if I’m stuck with it.
I am also a bit worried as I will be having surgery after chemo and don’t want my veins to be a mess as I think i’m right in saying the risk of developing lymphoedema could be more.
I will speak to my chemo nurse and team obviously but thought I would ask the real experts first if any of you have had a similar situation!
I found that after my 3rd FEC I was in tears due to the veins being hardened, it really hurt but I’m glad to say has started to get better. My chemo nurses said the veins will heal over time but I’m not sure they’ll ever be 100% but they will get a lot better. It seems to take a few months though but slowly the arm that wasn’t used last time is getting better (they’re alternating on me because I have to good side so they’re both fair game).
Sorry this is not more encouraging but I had the same problem and it lasted well after the end of treatment, in fact I’d say it was a further year before my arm was without any discomfort at all on extending it. My veins are still bu**ered though and it’s 2 years since the 4th and last tax.
How about having a line put in? I have a PICC line and it makes chemo so easy. A lot of others on here have a portacath or central line; may be worth asking your team for something, so that your veins don’t get any worse.
Venous sclerosis - I have it in my right arm after epirubicin, and the nurse said the hardened veins slowly gets absorbed back into your body, and it will take time, but it will get back to normal. The more poisonous the drug, the more it affects the veins, so it must be working well!
I had hardening of the veins due to the FEC 13 years ago. I now have a portacath (have had it in for the past 4 years) and it’s great as chemo really hurt when it was going through my veins after the FEC.
I’m on the E-CMF regime and have had 4 epirubicins so far - thankfully no more! All four have been put in the same arm because of lymph surgery on the other one, and I have had a really sore arm which has got worse after each dose. Initially after chemo the arm is swollen and I can’t lift it. After a week it eases a little, but every time I move my arm I can feel the veins pulling. I’ve found keeping my arm warm has helped - I’ve cut the leg off a pair of footless tights and I wear it on my arm under clothes and pj’s - worth a try!
It’s a relief to find others who have had similar pain as it doesn’t seem to be a problem for everyone who has Epirubicin and the consultant and nurses don’t seem to think it is anything to worry about. I’m assured the pain will eventually go … I really hope so! Please let me know if you find out any more about possible long term damage.
Hi again, thank you so much for your comments, I have now spoken with my team and decided to have a PICC line put in. Having read everyones comments I couldn’t deal with loosing anymore range at my elbows, particularly as I’m a Physiotherapist and have quite an active job that I would really struggle to work if it got worse with subsequent treatments.
I had the line put in on thursday morning which was very quick only took 30mins, a little sore and quite bruised but feel relieved that my veins will be spared from now on. Next chemo is on friday so hopefully that will be easier too. Having said that I’m realising that all my clothes have short sleeves which show the line…ah well atleast I have an excuse to go shopping!
Shelagh, I too am pleased that others seem to have this problem too (in the nicest possible way) as I was thinking that it was just me!
Good luck with everything
Charlie
glad you’ve sorted out your PIC . I had problems during FEC (finished last Dec) but not during the tax. However the physio who was treating my cording /nerve pain which flared up during rads also advised me to do some connective tissue stretching on my sclerosed veins in the other arm. I now have full movement in that arm.
Shudder to tell a physio what to do but she suggested grasping the arm over the sclerosed area and pulling the skin and underlying tissue firstly towards the wrist and then towards the elbow, It should feel like a Chinese burn. Certainly reduced the tethering in my case.
I’ve still got ‘tramlines’ up my arm after fec and tax chemo four and a half years ago.Was told initally that it was sclerosis and would eventually go- but how long is eventually? Not at all conscerned though as they no longer hurt and I hardly notice them these days.
Thanks Crispy, thats really helpful, I am a paediatric physiotherapist so well with in your rights to tell me what to do as I have no idea about physio for this kind of thing!
Thanks again
I’m having a Hickman line put in on Monday 6th Oct following more trouble with cannulation at my last chemos, and veins that won’t play the game. It’s a bit scary but a relief at the same time. Pain in my arm is beginning to ease as I’m now on the CMF chemo which doesn’t do any damage. Hope all is OK with you still.
Crispy - that physio advice seems extreme … but will give it a go
Hi Shelagh
Hope the hickman line went ok today, glad i have my picc line and does make things easier, just hope it wasn’t too sore for you when it was put in. Definitely give the physio advice a go as crispy says sure it has helped for me.
xx
Hi Ladies,
Have been posting for a few months on another thread but was really interested to read this one.
I am due to have my 4th FEC on Monday and have a review with my cons onc on Friday.
Since my last treatment I have had a very painful arm,having had problems with cannulation previously, mentioned it to my onc nurse and was referred for a Doppler scan this week. It showed no clot and when I asked the doc what was causing the pain, particularily on extending my arm, he said it was due to the chemo seeping through the veins and into tissue, and also said it would eventually go.
However having read the posts here I am now worried about a) treatment on Monday and b) how long if at all it will take to go? I too have a very active job (I am a PE teacher) and also swim a lot and doubt at the moment I could cope with swimming as my arm is too painful.
Just wondering how to approach it with cons on Friday, without sounding as if I am whining about something relatively unimportant in the bigger scheme of things? Comments welcome please!
Lyn x
Thanks Lyn for pointing me in the direction of this thread
I have had 4 epi and had my 1st cmf today. I mentioned that my chemo arm is still sore after my 3rd epi(my operated side was used because of this for my 4th epi)and I was told that it was phlebitis. I can’t use the cream I was given cos the smell makes me feel sick so I’ve been told to use anti inflammatories, providing temp is ok, and hot and cold packs. I too am a physio and am ashamed to admit that I haven’t heard of the anti-tethering technique, but i haven’t ever done any onc work. I will be giving it a try. I have asked about a PICC but there seems to be some reluctance about it as even higher up my arm my veins apparently aren’t good. As i heave to have chemo next week again i am nervous but i have been told that the methotrexate is an irritant rather than a vessicant.
Lyn, a sore arm is not unimportant especially when you’re in an active job. If i was at work and anyone grasped my arm i would be in real trouble. I have got full movement back over the last week or so but couldn’t do any heavy lifting and even just knocking my arm eg when making the bed is really painful. I think you need to tell your onc exactly how it is and give examples. Generally speaking when you’ve been working with people for any length of time you can tell the genuine and who is being a drama queen so don’t worry about sounding like you’re whining.
Nicky x
I would certainly mention it to your Onc. I suggest you ask if there is a physio attached to the unit who knows about connective tissue stretching.My physio now gets as many referals from the chemo staff as the radiotherapy unit.
Nicky the cPS website has information on willy Fourie (the champion of connective tissue stretching)
A year on although I can still see marks from the veins that were used for FEC i have full range of movement which I need for my work.
Thanks for that crispy-I will certainly make a note of these points to bring up tomorrow and see what they say. (Don’t trust memory as it is like a sieve just now!)
Lynxx
hi girls - I was assessed for a picc line prior to chemo and they tried to fit one but my veins higher up were too deep and narrow so a no-go, now waiting to have a Hickman line put in before next one - they got a vein for first one in good arm but had to use operated arm yesterday and after 4th go got it…much as I’m not looking forward to the line I’m looking forward to the relief, and bllod testd they took from my inner wrist area - ouch and side of thumb/hand last time!! Mary x
