Hello everyone, Helen, so sorry to hear your feet are so bad. It's a real pain, isn't it, as you can't keep off them all the time, although that's what they need! And Mowser - I'm amazed that your feet are so poorly after all this time! You really were in a bad way! I hope you both recovef soon. My 6 week rest from Cap is going well - I have finally got most of my taste back, although sadly chocolate still tastes a bit weird. Wishing all the Cap gang a happy new year with lots of good news and results for everyone! Barton.x
Totally sympathise with you on the feet front! Last cycle, not only did they tell me the disappointing news that Cape had stopped being effective for me after 9 months, my feet were so bad I couldnt walk-we had to hire a wheelchair to get me to the hospital and back! Two weeks on from having been taken off Cape, the feet are still only very slowly getting back to normal. Nails have lifted off the big toes, still have blisters healing on the sides of big toes, the feet are all cracked and peeling underneath, and feet still get hot if I have been walking on them a lot-I am worried I may have done some permanent damage!!
Sorry to have some off Cape as it seemed to be working really well for me initially. I am hoping and praying the new treatment works....
Take care of those feet-rest as much as you can and moisturise moisturise moisturise!! Frozen peas are great-went through quite a few bags!!!
Hi I have been on Capecitabine for 3 months now will have to wait a while for scans to see if it is working. So far apart from feeling really tired I have been fine except for getting really breathless, does anyone else have this problem.
Hugs to all
I've got bone mets and was on Letrozole after chemo last year. SEs were aching limbs and tiredness. I was on it for only about 3 months then my Oncologist put me onto Capecitabine. Two days later I was able to run up the stairs at home - previously I was pulling myself up using the bannister.
It works for some, but not others, I suppose. I was on Tamoxifen during the summer holidays and that didn't seem to do much for me either, so I'm back on Capecitabine.
I think I have seen long threads on here about the different manufacturers of Letrozole and which seem to be better.
I hope it works for you.
I feel vulnerable at the moment-onc is quite matter of fact and I had so many questions once I got out of the room I wanted to ask him, but I feel he just gets a little exasperated with my questions!!
I am so scared that this thing will take off and no other treatment will work... do you know I don't even know what type my tumour is! Did you ask or did they tell you?? I suppose the fact that I am being put on a hormone drug means it must be oestrogen receptive, but I dont know how strongly-if I hadn't pushed for these scans before Xmas as I wasnt feeling well, the tumour markers (which he had been using as his guideline for how well the treatment was working in previous months) would have given him a false picture and it would have been business as usuall! More Cape and he may even have felt confident enough to let me have an extra week off to rest feet! Meanwhile the little s--ts would have been having party of their own.
I guess I had taken his comments about being on it for two to three years as I was responding so well, that I think even he was surprised it had started up again-he called it perplexing. Well if he is perplexed, I dont know what I am! Can this drug work as well as Zeloda does? I suppose I think because this wasnt his drug of first choiuce maybe it is a law of diminishing returns??
Sorry for the rant but I have so many questions, and they are just buzzing round my head!!
Thanks though for answering and for just being there...
So you got this drug before you had mets? I have numerous in my liver and bones... I suppose it can be used before and after diagnosis of sbc?
What do you mean by Femara? Is that the same drug? I was told by onc to ask doc to prescribe Letrazole as health insurance wont cover it?
Well have seen the onc who was sorry to tell me that after only 9 months, Cape has stopped working.
They said I had new liver mets and some of those already there are getting bigger (I didnt want to ask by how much-too shellshocked and worried it would make me feel worse). My feet are recovering and I have asked for an extension to my antibiotics for the urine Infetcion as it hasnt cleared yet-still getting pain in abdomen.
I have been taken off Cape immediately and started on a hormone drug called Letrozole. Hormone blocker. I am a bit disappointed as the onc said towards the start of Cape, that after he saw me responding so well to the drug, he predicted I could be on it for at least two to three years. I guess I wonder whether even he has been surprised by how quickly it has become resistant.
Has anyone had experience of this drug (either before, or after Cape) and can give me some inspiring stories? Honestly not sure how to feel. I dont remmeber hearing much about this driug in all the posts i have read on the various threads..
Hope you are all having a lovely Wednesday and looking forward to the festive season. I need to get my act together and start getting Christmas ready!! At least I picked up a tree last night from the garden centre-I usually go for the non needle drop ones, but this year gone for the cheaper Spruce, as I LOVE the fragrance they give off. You close your eyes and think of Christmas!!
Take care all, love and hugs
A vulnerable Mowser xxxx
Thanks all, just hobbling around getting ready to go. The frozen peas worked a treat, melkted two bags in a matter of minutes, me feet were so hot! Will let you know how it goes. My urine infection still not better, pain came back last night with a vengeance and I only have tablets for today-it was only a three day course!! Not enough I dont think as I am always immuno suppressed!!
Thanks for all your well wishes. I will pick up some Christmas magic dust while I am out to sprinkle on our tree for all of us!! (Not talking drugs here, you understand!!)
I look very fetching in my fur lined maroon crocs, mens socks, black leggings and an old long cream jumper to hide my generous, wobbly behind. (No proper exercise since March!!!) No make up, or jewellery. Au Naturelle as you would say. Going to scare the hospital staff!!
Love and hugs and will report back soon.... ((( )))
I think the effects on my feet can vary a bit cycle to cycle...but a break cetainly reduces it...Im on second cycle after a 2 week break,,,no probs at all with feet on last cycle but feeling a bit of tingling today (day 6)..will be at its worst day 12-14 and first day or 2 of stopping and then largely settled beore starting next cycle.......last few cycles i have had an extra week off every second cycle and then extra 2 weeks off after 6 cycles,....but we'll see how it goes!
Thanks for your reply-have been in bed all day with my feet moisturised, and then on top of a bag of frozen peas... They still hurt like buggary.
Hope you have had a good day yourself, are you Welsh? Its either you or Bevlaar!!
Thankyou so much for your thoughts and advice-I have had periods where it got a little tricky and soles of feet got really red and sore, and nails infected, but nothing like this. My feet are throbbing in unison and I can't bear to even touch them.
I am reassured that it will settle as it did for you, as I really don't want to be taken off a drug that is currently working for me.
Can I ask, when your feet got better after an episode, did your feet 'turn' more quickly on the next course or were they as resilient as before? I know the walking on them is not a good thing when they start to play up, but you will know its difficult to stay off your feet when you are trying to have a life!!!
Also I have noticed pain in my right leg recently -like a shooting pain moving down from hip through thigh and into calf -almost a nerve type pain. Have you ever had that?
We will know where we are when I see the oncologist tomorrow.
Will keep you posted,
Hi Mowser....yes I have had times where i can bearly walk...although never off my feet altogether......it does get better and fades and disappears as gradually as it comes...no doubt you will have a bigger break to give it a chamce to settle......my suggestions for what their worth....stay off them (as you are !) as much as you are able...try to limit your walking as they are starting to get sore . use a high urea containing cream (such as flexitol with or without vaseline and socks on top. I find sketchers -air trainers (with memory foam linings) good and also periodically use MBT type shoes which takes more of the weight through the middle of your foot and gives soles and heels a bit of a break. Keep nails well trimmed (straight accross) to try and reduce nail infections (which at times have almost taken me off my feet). lets hope they settle down very quickly.xx
Jo, to answer your other question, my daughter is 22, but mentally much younger, as she has autism and learning difficulties. I am her primary carer so we in a bit of trouble in terms of getting things done for Xmas!
Her dad is invisible, hardly ever contacts or sees her, my 25 year old son works and lives on the other side of London. My two sisters both work full time, and one had a son with cerebral palsy, so not much support available in times like these...
But we take the hands we are dealt with in life! We will get through this.
Lots of love Mowser xxx
What I would say to you is even though you have not exeprienced these side effects, I think maybe there is a cumulative build up.
So do make sure you cream your feet and rest them, keep them from getting too hot, the first sign of problems developing, listen to them and pace yourself in terms of how much standing and walking you do.
I was like you, relatively trouble free until the round before last-I am now in the first week of my 12th cycle! They didnt recover properly in the week I had off and they have really taken off big time this round.
Think the dosage may be too much for my body to cope with-I have been two weeks on, one week off since March and a dose of 1800mg morning and night. My liver tumours needed to be hit hard as I had quite a few and some were large.
I will see what he says tomorrow (onc), I am so embarrassed to be in a wheelchair just for my feet but I really cant put any weight on them.
Take care, I will let you know how it goes tomorrow,
Hello, thanks so much for your well wishes!
Well after taking the antibiotics, for my UTI, my abdomen pain has eased, but now, my feet are so painful, I literally can't walk on them..Last night I had to crawl to the toilet on my hands and knees.
Today my feet are so painful, I cant put wieght on them. It feels like they are on fire and they are both throbbing in unison, and sore to the touch.
My sister has gone out and hired me a wheelchair just so I can get to my appointment-have called hospital-they have told me to come off Cape immediately otherwise, I could cause permanent damage to my feet and the nerve endings, and I will have to come off Cape altogether. I am really worried now as this drug does seem to be working for me-I am concerned I have damaged my feet forever. I have a croaky throat to and a cough developing. All ways round I feel so crap girls.
My daughter was hoping we could go on and get our tree today, and do Xmas Shopping-she doesnt understand why i cant go out, and is feeling miserable, as she wants to do Xmas things with me.
I am stuck in bed, with a bucket as a loo, feeling so fed up.
I am not prepared for xmas at all-apart from some on line shopping, and I had all sorts of xmassy things arranged to do this week, including dinner at friends. a work xmas party, and a panto. At this rate I dont know if I will be able to make any of them.
Have any of you suffered from your hands and feet as bad as it stopping you from walking and did you recover??
Thanks for that Belinda. The only chemo since secondary diagnosis has been Cape so I await a clinic appt to find out what next.
Hi lovely ladies, checking in after a really horrible weekend. Do you remember I was asking about groin pain and lower abdomen pain on a previous thread a week or so ago? Well, it just got worse and worse so much so that I had a total meltdown at home last evening-just had enough of it all-pain, exhaustion, nausea, constipation, and feet that I can barely walk on they are so hot and tender.
Ended up going to bed early, taking oromorph for the pain last night, (have not needed it much up to now) and today went to out of hours doctor. Transpires that I have a urinary tract infection-which weirdly I felt relieved about, as I was linking it to the other stuff that is going on. Hopefully, it is a completely unrelated.
Still feel terrible, but at least now I have antibiotics which I hope will knock it on the head quickly and reduce the pain! I see my oncologist Tuesday when I will get all of my results. Will be an anxious consult-you all understand about that!
To you lovely ladies, LD, Chocolates, Bevlaar , Bertie, Barton, Cat lady and all of you who have taken time to write back to my posts, and for all of you who are posting, thank you all so much for giving me strength and support. Its a difficult thing to explain to others just how important this forum is for us, willing each other happiness, and health, and a happy life with all that we are trying to contend with.
It gives me strength, and a lot of hope for the future and that is priceless. And I know I am not alone on this journey.
I wish you lots of love, and hope those of you feeling under the weather, feel a lot better soon!
Hi Margaret. ...you csn change your profile picture by clicking on:
My Profile / Avatars. There are quite a few to choose from. Love bev xxxx
Am feeling intrigued by the icons allocated to us..e.g, the lovely lion which is to my left! Why am I a lion? Im happy with it, but how did it get there??
Anyway, I wish you all lots of good health, hugs and positive feelings.....