Hi Waffles
Starting 4th cycle the free week settled my puffy hands and feet down. I must admit I feel fine everyone remarks how much better I am looking apart from not being able to walk properly things seem to be going well. I saw onc’s registra Wednesday she said I would be going for a CT scan I am not sure because onc said it would be after 6 cycles I will have to wait to see if an oppointment comes.
Well you take care xxx
Hi Marirose,
Sounds like you are doing well. Good luck with your scans. I am on my free week of my second cycle just now. I had no side effects this time. My hands and feet are fine. I’m still suffering from pain between my shoulder blades so worried I have progression there. I’m going to see onc next week so will mention this. I’m also getting a liver biopsy, at my request next week too. I’m terrified in case my mets there have grown since my last scan in December. I just hate scans- I know we need them but all the waiting and worrying is horrible. Nevermind, I’ll try to distract myself with my crossword book. That always helps!! Take care x
Dear Waffles
I do hope your biopsy on your liver goes ok next week. When you have mets you really do worry that they may be growing I try not to think too much about them but it is always lurking in the mind. I get concerned about mets in my legs a CT Scan doesn’t reach that far does it I don’t think I will get bone scans as often. But time will tell I hope the pain you are experiencing between your shoulder blades turns out to be nothing I had real pain in my shoulder that stretched down my arm and up to my neck. The scans didn’t show anything and now it seems to have gone lets hope yours is something simular I am sending positive vibes to you:heart: xxx
Welcome back to you both
I do hope it works for you both it’s a long time since I have seen you on the forum Barton apart from the new mets I hope you are feeling o.k. Stresshead I hope it does work especially on your skin mets. I am sorry to say I feel very much like you after getting 5 more mets from the wonder drug Everolimus and Exemestane combo but hormone drugs have stopped working for me now. I have felt so well on this treatment my scan will be coming up soon so we will see if it is working.
Hello to Waffles are you still doing well I am on my 2nd week of the 4rth cycle and all is well.
\love to all xxx
Hi Marirose,
Hope you are continuing to do well on Cape. I am a few days into my 3rd cycle and I don’t even need anti sickness pills any more. Today I went for liver biopsy but it didn’t go ahead because my ‘multiple’ mets, which were under 1cm anyway, seem to be too small to detect now. I know US is less sensitive than CT for detecting liver mets, so no doubt they haven’t disappeared, but it looks like Cape may be having a positive effect. Its just nice to go to the hospital and not hear horrible news for a change. Hope your scan goes well. x
Great News Waffles
I am so pleased for you as I don’t have liver mets I am not familiar with the proceedures but you must be over the moon. We always go for results expecting the worse but to get such good news must feel so good. I have not heard from the CT unit so maybe the registra got it wrong the onc did say 6 cycles I will ask her next time because most seem to have one after 4 cycles.
Love to you all xxx
Thanks Marirose
I know we won’t be able to tell exactly how things are going until I have a CT scan but I’m taking this as a good sign anyway especially as I went in there dreading being told that my liver mets had spread everywhere! I’m getting a CT after 4 cycles but maybe your onc wants to wait a bit longer because your skin mets are obviously responding well to treatment. xxx
Hi Marirose,
Good to hear you have you scan all sorted out. Hope it goes well. It’s good you don’t have to wait too long for results. I’m doing well, both physically and mentally. The pain between my shoulders is a lot better although I think I have the start of hand/foot syndrome. I’ve got an appointment for a CT in three weeks so not looking forward to more scanxiety. Best wishes. xxx
Hi Waffles
How is the foot and hands effecting you. My feet are fine just a little peeling but that’s gone now. The hands towards the last few tablets before free week started to go red and puffy again but as the free days go on they are almost back to normal. I cream my feet (or rather Hubby does) morning and night and hands I use hand cream after every wash and use rubber gloves as much as possible for different jobs. Other than that I feel ok hope the scan results are kind to me.
Stresshead not heard from you for a while are you any better ?
Love to you both and Barton also anyone reading and on Capecitabine (just had to show I can now speel it)
xxx
Hi Marirose,
My hands and feet feel itchy more than anything else but nothing too terrible. I’m using Eucerin cream which seems to be helping. Really hope everything goes well with your results on Wednesday. xxx
Hi Waffles Stresshead and Barton
Great news Capecitabine is working scan shows bones healing and stable elsewhere. Thats my 4 cycles over with now I start no 5. My hands have just settled down now the next 2 week will get them going again.
Just got back from hospital couldn’t wait to share the news.
Going out shopping now for some more cotton socks.
Love to all xxx
Hi Marirose,
I hope you have had a nice evening celebrating your results. It was great news.Can I ask what made you think Cape wasn’t working?I must admit some days I think it’s working because I am relatively pain free while other days I have weird aches and pains and I feel it’s not doing its job. Also have you or any of our past or present Cape ladies had problems with sore gums. I can’t chew anything moderately hard.This is my main s/e. My hands and feet feel really dry but aren’t peeling or cracking. so not too bad there. Best wishes to all. xxx
Hi Louis, my side effects aren’t too bad at all. My feet and hands are a bit dry and sometimes tingly or itchy. Sometimes I get a bit of indigestion with the pills but this is helped if I take them 20mins after breakfast and dinner rather than after a snack. I.'ve got sore gums at the minute. I am bit prone to that anyway but I suspect the drug isn’t helping. I know everyone is different but my side effects are definitely manageable and you get one week in three of to recover anyway. You get to keep your hair too which is a big plus. Keep in touch and let us know how you are doing. All the best xxx
Marierose…fantastic news my darling…so glad to hear cape is working for you.
Waffles/Louis…havent had the sore gums or any majorside efects with cape…just have to go to the loo more often…not exactly diahorrea but still annoying (sorry to be so graphic)…still i can put up with that if the cape helps…jury’s still out on that one!!.
This is my second time on it…i think my onc is using it as a ‘stop gap’ til we see what the electrochemotherapy does.
Love to all. x
Hi everyone
Welcome Debra to our little group. The se’s are not quite as bad no hair loss may thin but mine hasn’t and I have starte my 5th cycle. You are in good hands here. It Seems the worse se is hands and feet I’ve started with both but not anything bad as my BN said moisturise moisturise I cover my feet in cream at night and wear bamboo socks from boots or cotton socks same with the hands I put cotton gloves on. I have only just started with them this week. But if you read back posts you will find lots of advice. Good Luck
Stresshead Waffles Barton and Carolyn thankyou for your kind remarks.
Waffles I have not got a sore mouth at all but on my last e/e chemo my mouth was so bad. Had I known then what I found out since it wouldn’t have been so bad. My problem was reflux acid which my dentist pointed out to me he sent me to my doctor to ask for treatment and he put me on Lansoprazole but brushing my teeth after meals and using a mouth wash water and teaspoon of bicarbonate of soda helped that. I got 8 ulcers and had to come of the e/e for 2 week to let them heal. I did try so many mouth washes but I found bicarb easier but when it gets bad Gelclaire heals better that was on prescription. Don’t let it get too bad mention it to your onc when you go. I am here to help.
Talking about anti acid tablets in previous posts it was said that the tablets interfere with capecitabine my onc does not agree but we decided I would take mine before lunch and then it wasn’t near the time of taking cap.
Stresshead you seem so much better these days I am glad to see you in a more positive frame of mind how are your skin mets? Mine still look good but the new ones seem to be growing in size but not at all red so I try not to let them bother me. I look forward to you getting this electortherapy I do hope they give you the ok.
Well friends I will send you all big hugs and love xxx
Sorry Waffles you asked why did I think it wasn’t working I keeep getting niggly twitches around the tumour (chest wall) and the ribs to my side (I have cancer in ribs) when I told onc she said alot of women worry about this kind of thing but it is the cap working. Just hope she is right. x
Hi everyone,
Thanks Barton, Stresshead and Marirose for your replies re sore mouth. I will say to onc next . I will ask about gelclair and give sodium bicarbonate a go in the meantime.
Marirose I hope my aches and pains are just Cape working like your.
HI Debra, I work full time on Cape with no problem.I haven’t lost any hair at all. Also meant to say, even if you do get side effects the dose can be adjusted quite a bit.I’ve been on IV chemo before and I certainly prefer Cape.
Hello to you too Carolyn
xxx
Dear Barton
Exemestane does make your hair thin I remember seeing it blowing in the air when I blow dried it although it did settle down I was on it 17 month but my hair always does do well I have not lost any on cap and I have it coloured without any trouble but not everyone is not the same. How did cap treat you last time did you have any trouble with hand and feet? my hands are red on the palms and the cuticles seem to be very hard and are growing more than usual but at least the white has still remained for now they recovered from being black from the e/e.
Love to all xxx
Thanks Barton
your input into the hands and feet is very useful and I shall remember it if it gets bad it is always handy to have other peoples tips. So far so good I seem to be keeping on top of things.
Waffles I do hope your mouth is a little better there is nothing worse than having a sore mouth it upsets your eating. I know last time when mine was sore I lost nearly 2stones. But since starting cape I have been over eating (Christmas didn’t help) I have nearly put 1/2 stone back on so I had better watch how much I eat my tummy is getting larger again.
Stresshead where are you I do hope you are ok.
Love to you all xxx
Hi Marirose,
I’ve been using alcohol free mouth wash and things are certainly much better especially if I stick to food that isn’t too crunchy. I’m on my week off which is helping too. Best wishes to all xxx