Welcome to the forum and our thread the other girls will pop in to say hello.
Thankyou for tip about cuticles I must admit mine have caused concern although noe they seem ok maybe the vitamin E in my hand cream has helped I also bought Eucerin with 5% urea. We try anything to help and don’t mind spending if it helps. My feet have been great get a little dry skin forming but it soon goes I use Flexitol heel balm it’s very good I then cover it with vaseline and then socks. I have never used so much vaseline it also helps on the hands. Barton is our mentor she is on her second session of cape she was with some very knowledgable ladies 12 month ago and we value her input.
But hey you are doing well 8 cycles on you should have some good advice. I am on my 7th next Wednesday I have felt good on this treatment my main problem has been hands luckly no split fingers yet. My last scan showed bones healing and everything else stable should be due for another soon I really do hope it will be ok I would like to stay on this for a good while.
Hello to all our lovely warriors Barton great news you are thinking of going back to work good luck and Louis.As Waffles says it is a great distraction from ‘C’ Bellabean keep posting and Stresshead I’m missing you.
What a day!!! my appointment was 13.45pm after one hour and watching people come and go I asked reception why it was taking so long. Someone had crossed 13.45 out and put 3.00 in I was mad I was next in. Then in walked a very butch Dr that I had never seen before came in she looked like a prison warden dressed in black. She said you have been ok on capecitabine we will get you your next cycle. I said when will I be getting a CT scan she said next time. I told her I was worried it wasn’t working as my skin mets were starting to turn red again and the new ones were developing into more and turning red. She looked and said we will stop cape and get you scaned as soon as posible. I had to ask for my deno jab otherwise I don’t think I would have got it. Then they gave me my next appointment for 3.45pm they close at 5.00pm
Sorry for the rant but I still feel cheesed off with it all. I hope you all had a better day xxx
Hi everyone, sorry not been on for a while, I’m doing ok on cape no real side effects yet. At the end of my 2nd cycle so on my week off now just been a bit worried I keep getting a few pains but other than that I have a lot more energy than I’ve had for a while. Just had my scan come through for the 11th April with results on the 15th so keeping everything crossed.
just starting to look forward to a few things now I got married on the 28th December then started to feel unwell after new year so it’s been a bit emotional we’ve got champagne breakfast booked for next week and then a overnight stay the following week in a hotel so looking forward to them now.
Hi marirose.that has happened to me in waiting room .nurse forgot me so waited 1.and half hours…well you had bad day didn’t you…i was told a few weeks before i came off cape…that sounds very rushed and sudden…hopefully they will scan you asap.and maybe put you back on it❓ …thinking of you .the way we sometimes get treated makes me so cross…?..sharon…xx
Thanks for your concern I think being taken off the cape by someone who does not know me and I don’t know them I felt a little annoyed but because she has organised a scan maybe it is a good thing.But I feel it should have been my own onc. Just feel as though I am pushed from one to another these days.
Hi marirose…hope the ct is soon and you can go back on it…I always feel rushed in and out of oncology…well this will give your hands and feet a little break. Sharon.
Sorry I didn’t post yesterday it was a busy day where ever I go I hear about others that have got this dreaded decease.
I hope you have a lovely champagne breakfast and overnight stay next week it will give you a boost. I am pleased to hear your se are going well.
Hello Barton I hope you are feeling ok now I didn’t know you needed a blood transfusion and you had been poorly I read it on another thread. Hope I have not got it wrong! One of my hands has got a couple of splits not in the finger ends though but the side of the hand along one of the lines and under the little finger strange!! I am continually creaming my hands with different hand creams and the old vaseline. Feet have been fine just a bit of dry skin but it soon goes. I wear bamboo socks at night they are very good I bought them from Boots and they are quite thin.I bought some cotton socks men’size but I threw them out of bed on the first night I couldn’t wear socks in bed but Boots socks are ok. I also use the bamboo gloves and get on ok with them. Must look a sight at night white socks and gloves for bed just need a night cap although the night cap I prefer you drink.
Hello to Waffles and Louis and anyone else on cape I hope you are doing ok.
Sorry you are feeling low we all get like that at times I can only repeat what Barton has said.
I have had aches through my cancer journey that have turned out to be nothing also with the cape I asked my onc why was I getting twitches in my tumour area she said it was because it was working. Right now I am in limbo waiting for a scan to see if it is working I have got skin mets and they seem a little different if I had seen my proper onc she could have reassured me that it may be no different but it was a woman I had never seen before she doesn’t know me but at least it will put my mind at rest to have the scan.
So try not to be too afraid Louis there are so many treatments out there if those soldiers lose the battle but lets hope they don’t.
Hi everyone,
Just had a little break from the forum over the last couple of weeks. I’m sorry to hear about your experience at your appointment Marirose but it sounds like a scan is the best way to go. I hope everything goes well.
Louis sorry you are suffering from bad anxiety. Waiting for scans and results is just awful, I know. Have you ever tried beta blockers? They don’t stop you feeling worried but they are good for preventing the physical symptoms such as trembling, sweating, faintness, palpitations etc. which helps a lot. As Barton mentioned Reiki is a lovely therapy and worth a try. I would also add that absence of symptoms is a very positive sign. When my disease was progressing (when I was on Aromasin,which didn’t work at all for me) I was in a lot of pain.
Barton glad to hear your transfusion helped.
I’m on my 6th cycle now and doing well. Hands and feet are very leathery looking but not sore or splitting. Not too many problems with pain except across shoulders which is actually much less frequent than before and showed up as a tiny met on a recent scan so onc not worried about it. I find my pain in mets has been spiking for a few days from about day 5 after my denosumab injection. I think Carolyn has a similar issue. Onc thinks this is a drug reaction as it is so predictable. Anyone else noticing this?
Hello and best wishes also to Bellabean, Scatch, Glo, Stresshead and our new friend Mazurka. Good luck to everyone with scans or results coming up. xxx
Hiya waffles …Yes its day five when I get the aches worst and they last about five days …I get a headache on day two after denosumab too.
I told my oncologist and she just poo pooed it. I have had three now.
I’m just waiting for an appointment for a ct scan as haven’t had one since October …not worried about scan but its the results that will c me sh…ting myself !! By the way these injections cost £340 a time so I was told.
Hi Carolyn,
It is a strange side effect but I can put up with it as long as I know it is nothing to worry about.
Waiting for results is just the scariest thing I’ve ever experienced in my life. I hate it and it isn’t helped by the fact that my onc’s clinic usually runs at least an hour late. It’s torture! If all goes well, I won’t need a scan until July so, hopefully, I can have a few months without scans. I hope all goes well with your scan when you have it.
Best wishes xxx
Hi Debra,
I have bone and liver mets and in the middle of Feb I had a CT scan in the middle of my 4th cycle. All through the treatment I have had niggles and sometimes worse than that in my bones and the liver area. I was 100% convinced my treatment wasn’t working. In actual fact it was working and had managed to hold everything stable. I was amazed as my mets had been progressing really fast since I had been diagnosed in July. (Aromasin didn’t work at all). Cape can be a bit rough on the stomach and oesophagus and irritation in these area certainly mimic liver pain.
I’m now on my 6th cape cycle and my aches and pains are certainly less than they were.
I know it is impossible not to worry but I’m sure there are plenty others who can tell you pain during treatment isn’t always a bad sign.
I’m sending you all my best wishes and positive thoughts. xxx
Hi everyone, it’s been a strange few weeks lost count how many times I’ve been at the hospital. I’m feeling ok but they can’t control my temperature it goes well over 38. I saw my consultant Friday and he said it’s no good admitting you to hospital again because it’s proved antibiotics dont do anything for my temperature so he said If I promise to come in if I’m unwell I could go home. He did say it could be because I have come of the steroids they could have been keeping it down before but he didn’t want to put me back on them. I have now got to keep a temperature diary. Has any one else had this? I’m on my 3rd cycle and so far no side effects. I do get the odd niggle around my liver and Im always thing it’s not working but my husband always says to me it’s working and doing something that’s why it’s hurting you at the moment so I just cling to that probably silly but it makes me feel better. I have my first scan on the 11th April results on the 15th I’m always ok until a couple of days before then I’m a complete reck and I know it’s going to be a very long week till I get my results xx Big hugs to everyone xx
Hi everyone,
I just noticed on the bone mets thread some of the ladies talking about chemo giving them a runny nose. I’m prone to a slightly runny nose in the cold weather but it has been much, much worse over the last few months. I’m thinking it may be a Cape side effect. As side effects go it’s very minor but it is a bit embarrassing to have a constant drip at the end of my nose especially when I’m talking to someone.
Anyone else noticed this?
Best wishes to everyone and good luck for those of you who have scans/ results coming up. xxx
I’m back starting cycle 7 The scan results were fantastic made my day. Because the main oncologist at our cancer hospital wanted to few all scans from October to the start of cape at the beginning of November I was given a late appointment this afternoon. Shows they can get results quick it was last night I had my scan.
The results were the tumour has reduced from 35mm to just under 26mm and everything stable mets and bones so cape is working. The three weeks I have missed has not made any difference and also the cape carried on working while I was off it the hands began to split on the lines at the side of the hands. But now they are almost back to normal. I think a cream I saw in an advert in Boots magazine for dry hands that crack and split O’Keefe’s Working Hands found in certain Boots some diy shops we bought it from Screwfix £4.99 the advert says if unsatisfied you can have your money back.
Well thats me Waffles thankyou so much for the laugh I have a dripping nose and know how you feel I thought it was because I’m getting old.Thankyou Barton for the explanation it makes me understand why I also get a sore nose.
Debra I hope you are feeling better Bellebean and anyone I have forgotten I wish you all well.
Cyber (((((((((((hugs))))))))))))))))) to you all love xxx
Hi Marirose,
I have just seen your good news. I am so happy for you. I know you were very worried about this scan. You must be so relieved to be back on the peachy pills. Do something nice to celebrate. ((( hugs)))) xxx
Sharon.