Painful arm

I am undergoing FEC-T treatment and am about to have my fourth lot of chemo. Since the second lot, I have had a really painful arm. The oncologist, BC nurse and physio have all looked at it, and I have had ultra sound to check that it isn’t a bloodclot (it isn’t). It doesn’t seem to be lymphodoema because the swelling is fairly localised on the inside of my elbow but the pain (although it seems to start there) stretches into my forearm, wrist, upper arm, armpit and shoulder. I should add that because of axilliary clearance on my right, they can only use my left side for chemo (which anyway had SNB and mastectomy as my breast cancer was bilateral).
If anyone has experienced this before, or can give me any ideas regarding what else I can do, I’d be very grateful. Neither my oncologist nor my BC nurse seems very enthusiastic about discussing inserting a port. Is this just something I have to put up with?
Thanks for any replies
Louis the cat

Hi louisthecat - you don’t say which arm. Is it the arm on your surgery side or the side you are getting chemo. My chemo arm has been very very sore, in a way that you describe. It’s due to the veins getting damaged by the FEC. I’ve had a portacath in but that’s because I’ll be going onto herceptin after chemo. I’m due chemo 4 next week, moving onto T. Having had the portacath put in I’d say if you can manage to get through without you are probably better off because it was quite an unpleasant proceedure and has left a massive bruise on my arm - it will also need to be surgically removed at some stage too. Picc lines seem to be less intrusive so if it gets worse then maybe push for that as an option. I’ve found putting a hot water bottle on the affected arm a couple of times a day helps. My chemo nurse recommended this for sore veins - it eases the pain and encourages healing.

Hi Cat
I had a bilateral mastectomy too and have the chemo in the side which had the least nodes removed. Ive had 4 lots of epirubicin and my arm is very sore. Not mentioned it to anyone as they said epi causes sore veins so Ive assumed its that
Mandy xx

Hi both
thank you so much for this, it’s really helpful to know that other people are experiencing similar (though I am sorry too, it’s painful isn’t it?) It sounds like this is a side effect of the chemo which I can’t do much about (as it is in the arm which they are using for chemo) but I’ll definitely try the hot water bottle thing, and will mention it again to the oncologist next time I see him.
Thanks for your help, it’s much appreciated
Louis the cat

Hi louisthecat, I had a similar experience to you, I found keeping the arm warm before chemo helped and my hospital put my arm in a bucket of hot water before FEC and wrapped it in a heated blanket during and when I got home I used a hot water bottle. I am a year and a half down the line now and my arm has recovered very well. Hope yours feels easier soon

Hi louisthecat, I had a sore arm too after 3 FEC but when I moved onto TAX it got better as tax isn’t so bad on the veins, x

Hi Louisethecat -8 days after my 2nd chemo (fec) I had a very painful arm from the inside of my elbow down to my wrist. I can feel 3 hard lumps. I mentioned to my onc and he just said ‘phlebitis’ and not much more. I think it was caused by the surgeon who inserted my portocath as he could not cannulate my hand due to my veins being rubbish so resorted to squeazing my arm between these points to make veins stand up more and as the chemo can cause problems with your veins it has exasperated the problem. My arm got better until the 3rd lot of chemo was given and exactly 8 days later the same thing happened again. It takes about a week and things do improve but i’m due my 4th lot of chemo on Wednesday and am not looking forward to suffering again. I will mention again to my onc but don’t hold much hope of a cure. My Bcn says she has never seen this before and doesn’t think the chemo is causing it to flare up but we will see what happens next time. One thing she did suggest is rubbing ibuleve gel into my arm and putting a hot water bottle or heat pad onto it as the heat makes the gel more efficient but I haven’t tried this yet as the pain had almost gone by the time I received this advice. Hope you feel better soon

I had the canula for my first FEC and have had a sore hand and arm since. I was onc yesterday and he also advised ibuleve gel and said that it would settle eventually. I now have a portacath and although it was quite painful when it went in and I had a lary badly bruised arm too, it it fine now and my second FEC was much easier using the port.

wow, thanks so much for this info everyone, it’s really helpful.
Louis the cat