Hi there, The hospice referred me to the podiatry service. I had a phone call this morning asking me to go in this afternoon. The podiatrist seemed aghast at the fact that I was previously advised just to soak my feet in salt water and rub moisturiser in my feet given the state of my nails. She cut away all the detached toenails and cut away all the dead skin on my feet, including the the area on the side of my foot where I have a large split in the skin. My big toes are now covered in dressing with an iodine patch next to the affected skin on the nail bed. I have tape holding the split in my skin together to help it heal now that fresh skin can touch fresh skin. I see her again next week when she hopes to deal with the state of the skin under my right big toe. All in the hope that my feet will be in decent enough condition for me to get back on the capecitabine when I see the oncologist next week. Sorry if this is too graphic, but if you do have problems with your feet it may be worth seeking a referral to your local podiatry service.
Snoogle, thank goodness you have someone looking after your feet now. Its awful that they have had to get so bad before something has been done. I hope you see good results quickly.
Is it normal for lumps to start hurting on capecitabine? My neck lumps didn’t hurt at first, but some days now really painful. I can’t work out if they’re just growing, or could it just mean the drug is doing something? Am halfway through my 4th cycle, oncologist doesn’t seem in a hurry to see me - appt in a few weeks time.
My lumps in neck hurt too, not always hurting sometimes just a long dull ache, but they are sensitive to touch, I thought it was maybe because I was always prodding them to see if they were any smaller. They never used to have any feeling before I started on this treatment so I was a bit worried. When I spoke to BCN she said it was a good sign but didnt elaborate on why! Onc didnt give me my 7th cycle on Thursday as I picked a bug of some sort up in America so on loads of antibiotics to try to sort me out. Had CT scan on Friday which will measure if they are shrinking and get results and hopefully more capecitabine on Thursday. Try not to worry, easier said than done I know x
Thanks smiley, glad I’m not the only one! It does seem to vary from day to day. I’m not sure it’s working though as I’m on 4th cycle and definitely no shrinkage, slightly bigger if anything. My onc will probably want me to do carboplatin as a next option. You are triple negative also aren’t you? Have you had any other chemos in combo or just the capecitabine? X
Hi Scaryfox, yes Im triple neg too. I was first diagnosed in Oct 08 and had WLE, 2.4cm tumour, grade 3 with vascular invasion and 8 nodes affected. While I was on chemo - 3 FEC and 3 tax, I developed another node in axilla which they took out. Had 20 rads and finished it all in July 09. Then in Oct 09 it recurred in my supraclavicular, ct scan showed 7 hotspots around that area. They werent sure it wasnt just reactive from all the treatment and decided to just keep a close eye and then the lumps just started to appear. It may be that I need to go onto another combi if this capecitabine doesnt work, will know on Thurs after I get results. My lumps feel different every day, some days Im elated as Im sure they have shrunk and the very next day it could be a whole different story and Im sure they’ve grown. I try to keep very positive about it all but get the odd mind talk which isnt helpful at all as I suddenly become more knowledgeable than the doctors and know far more than they ever could and scare the living daylights out of myself. A quick chat with the BCN puts it all back in perspective!! When will you have a scan or ultrasound to check the status of the lumps? x
Know what you mean re lumps, they feel different every day, some days big, small, painful, non painful. I haven’t seen my onc for a few weeks, though nurses keeping an eye and updating him by phone, my biggest neck lump developed a rash on the skin over it, looked like a love bite! Then it went itchy and flaky, I put some oil on it and it went back to normal, onc seemed unfazed by this, he’s pretty laid back!
I am trying to mentally convince myself that all this means the chemo is working, but it’s hard when the lumps aren’t going away! I don’t know when they’re going to scan me, think I will ask at my bloods appointment on the 30th. Best of luck and my fingers are crossed for you for tomorrow! Let us know how it goes? X
I know what you mean about lumps because I am the same with my skin mets. I am on my 4th cycle now and don’t know whether they are improved or not (which must mean they are much the same). My husband and my nurse thought the red skin was lighter and less scaly but my Onc seemed less convinced of any improvement so I don’t know what to think. I wish I could stop looking at it, it’s becoming an obsession.
Fingers crossed you got good results on Thurs, Smiley275. Scaryfox, I feel you and me are at the same point, not knowing whether Cap is doing anything for us or not. I have a scan in 3 wks time - dreading the results.
Hello there I was wanting to know from those of you who have benefitted from this treatment what positive signs if any did you have prior to the scan that the treatment is working. Also after how long did you have a scan. My mum is due to start this chemo on monday and just wanted to know what tp really look out for.
Thank u xx
From what I’ve read on these forums people react very differently to this drug. Some people can stay on it for years with positive results whilst others find it so toxic they cannot tolerate it.
Personally I was on it for a few months before I developed planter palmers syndrome where the skin was literally falling off my feet. I lost both my big toenails. Despite this I did react positively to it but am currently on a break whilst my body recovers. I know that there will come a time when I have to go back on it, but at least I have access to podiatry services now!
I guess what I am saying is that from my own experience you don’t necessarily know its working from symptoms experienced. However, I would recommend that your mum uses hand/foot cream like its going out of fashion and that where possible she puts loads of cream on her feet and then puts some socks on as much as she can.
I have had three ct scans so far this year. One pre-operative in January and then another two just six weeks apart during the summer as there were some anomolies in the first of the two. although never really elaborated much on the second. Still I am here and that’s the main thing. Just starting to plan the second Christmas that I didn’t think I’d have.
Hope things work out for your mum on this treatment.