Xeloda / Capecitabine - Your Top Tips, please?

[Waffles]

Thanks Marirose,
The wonderful thing about the forum is that wise advice of Belinda and other ladies like her is still helping us now and will continue to to help others in the future . xxx

[Marirose]

Hello crusader Waffles

My lips have become sensitive not quite as bad as yours sound I can still eat hot curry's but I try to be careful because I know what it is like to have a sore mouth from the last tab chemo. I am getting trouble with my eyes though they seem to smart at times apparently another se.

Before starting cape i read the posts from the beginning and admire the ladies that have gone before us and i thank Nicky for keeping a watch over us. I really miss Belinda she was a truely inspirational lady who was there for us all and I could not find her silver plasters in Wilko's either.

Love and (((hugs))) to all peachy crusaders xxx

[Waffles]

Hi fellow crusaders,
Tomboy and Marirose, as Nicky mentioned she was on an 80% cape dose for 18 months and it was still effective I also read that the late Marif known as 'The Xeloda Queen' who had liver and bone mets and was on cape for 8 1/2 years was on a very low dose ( I think as low as 50%) for much of that time. So obviously, the dosing is really flexible.

I'm very lucky in that although I've got very dry, thickened skin on my hands and feet I have no pain or cracking. However, I have a new side effect which is a bit bizarre. My lips and the front of my mouth have become incredibly sensitive to heat (temperature and spiciness) and saltiness. I have no ulcers or skin breaks though. I had a mild curry tonight and I had to wait till it was stone cold and even then I could only eat half of it. I'm having the same problems with hot drinks which is evem more annoying as I love a cup of tea. Has anyone else had similar issues. If so, how did you deal with it?
Best wishes xxx

[EJ81]

Tomboy I hope your onc can help get your side effects under control. It sounds pretty miserable for you at the moment.  Remember the only person you have to please is you. I know it's hard when people are willing you to carry on with life as before but that is partly their problem in dealingwith/not dealing with your diagnos. Be kind to yourself.

Lots of love Ellie xxx

[Marirose]

Hello Tomboy

I am so sorry to hear you are having a bad time the hands and feet syndrome I have had bad times myself the feet brought on by standing too long and not resting the feet I have not had too much trouble with them but my big toes have suffered they have got swollen. But the hands have been very very red and this week my free week I have the biggest split at the crease of my thumb. I do use a walking stick and I think the pressure on the stick has helped cause it. 

I have been to the hospital today and saw the BN who asked how I was getting on I showed her my split thumb and she went to look for some plasters or dressings that would help and be secure while still moisturising. My onc came in and Jenny the BN told her about my split when the onc saw how red my hands were she said she was reducing my dose by 10% I asked her not to because I have had such good results with this treatment but she insisted and said it should work just as good. My feet are ok but the hands are what she was concerned about.

So your onc will proberly reduce your dose anyway but I should ask if you could have it reduced. You have had some good advice from our other friends so I will not go over that again.

Sending you lots of ((((((((((hugs)))))))))))))  xxx

[Barton]

Tomboy, I also think you should ask about getting some time off work. See your GP and get a sick certificate if needs be - and go home for a few days. Let the family pamper you for a bit.

Hugs and thinking of you (and all Cape Crusaders, as always).

Barton.x

[tomboy81]

Hi ladies. Thank you all so much for your kind words and advice. I'm currently en-route home from my work conference which I just about managed to survive! I ordered a risotto at dinner last night so I could eat with just a fork and my left hand (my right hand is wrecked!) I also had to leave extra time to do everything due to hobbling at snails pace and issues with getting dressed, unbuttoning trousers to go to the toilet etc. Now I have the joy of battling through the London Underground to get home. The things we have to endure,eh? I'm seeing my onc tomorrow so I'll definitely ask about a dose reduction. I'm really struggling in my current state. Good luck to everyone having scans, appointments this week. Big love to my fellow "cape crusaders" xxx

[nicky08]

Hi Tomboy

I hope you have been able to get some relief from your very sore hands and feet. Also I think your oncology appointment is tomorrow so I hope you can discuss all of these problems with your oncologist and get some changes to the dosage as well as extra things on prescription that may help you. We often don't know about what is availalbe until we ask, there certainly doesn't seem to be any desire to inform us! (or so I have found)

Nicky x

[scratch]

Also yes it is based on height and weight.i can't handle the first dose of cape so they adjusted it and I was fine..then later down the line I lost weight and it was reduced again..im on different meds now but had 13 months on cape..sharonx

[Waffles]

Hi Tomboy,
It sounds like the side effects are hitting you reallyhardI I think a little while off work until you get your dosage worked out would be best if that's feasible. ((((hugs))))xxx

[scratch]

Tomboy...go home if only for a few days it will give you time to rest and reflect..theres no way you can keep up with work and after work events even if your well it knackers you...a couple of days away will help I'm sure...sharonx

[Barton]

Tomboy, if you need to go home, I would say go home. Can you get time off work for a couple of weeks? It sounds like you really need it.

Hugs, and thinking of you. Barton.x

[tomboy81]

want to run home to my Mum and Dad's for a cuddle and to hide away from the world. Everyone wants me to keep going with my London life and job but I feel like I just can't do it anymore. I'm such a mess. I can't even text anymore because of my stupid red hands and excess moisturiser! So fed up. I'll see my onc on Thursday so will chat about things then. Thank you xxx

[tomboy81]

Thank you Barton. You are so kind. I'm such an emotional, exhausted wreck at the moment. I just

[Barton]

Hello tomboy, sorry to read you are struggling so much. I can empathise with the emotional side of things - sometimes I can't stop crying (very embarassing when you are in Tesco's!), due mainly to the exhaustion. I suffered especially with that and breathlessness the first time I was on Cap. I don't get quite as bad since restarting Cap for these last 7 cycles. No good telling you that really, but it does tell you it can get better. Please see your Onc and he/she might let you have a dose reduction - that's what helped me. I went from 4000mg a day down to 3600mg a day, and it helped massively, and my mets stabilised and shrank even on the lower dose - so much so that I came off Cap completely for about 8months. I was on Exemestane during that time though, but eventually had some progression, which is why I am now back on Cap.

If you are that exhausted, you need to tell your colleagues that you can't make the drinks evening (make up another excuse if they don't already know you are on chemo - perhaps you could not have slept well for the last few nights or something), or perhaps just stay for half an hour. You do need to be a little selfish here, and think of yourself. You are going through a hell of a lot at the moment.

I hope you can read this before your evening do and that you get some relief soon.

Hugs and best wishes. Barton.x

[tomboy81]

Is the dose calculated by your height and weight? I am currently on 3500mg per day. As no hormonals seemed to have worked for me, I'm keen to stick with the cape if it's kicking cancer's bum. However, I'm feeling so miserable! I'm off to a work conference today and was almost crying at the train station this morning. I can barely walk or even hold a pen at the moment. I know there's going to be "team bonding" drinks tonight too and I'm so exhausted. I'm really struggling to cope right now xxx

[nicky08]

Hi ladies

Although I'm not on Capecitabine I was for about 18 months in 2013 so am very familiar with the side effects! Luckily I didn't get really bad feet although the skin was very dry even with moisturising and I used to get painful splits in my fingers. Some things that helped were healing plasters which you can get from Boots etc, our lovely Belinda used to swear by silver plasters but I must admit I never found them so can't vouch for them. I used a cracked heel balm, either Boots own or flexitol (sp?) which has 25% urea rather than the 10% that some creams have. Also I had on prescription pyridoxine (Vit B) which is meant to help and when things got bad I used to take an extra week off (with my oncologists approval). Btw you can also ask for a dosage reduction as you do need to get the life balance right. I was on 80% dosage for the whole 18 months and still had good shrinkage of liver mets and stability in my bones.

Hope this helps, along with all the other advice that has already been given.

Nicky x

[Barton]

Oh, tomboy, you poor thing! Is it the walking on a mixture of broken glass and burning coals feeling? Ouch! I know that one! I didn't actually find a cure for it - it just gradually subsided when I Vaselined my feet. Don't like the squishy slipping around in slippers feeling, though. Just keep on doing what you are doing and hopefully it will gradually get better. Sorry I'm no real help.

By the way, you have a perfect right to have a grumpy day.

Hugs. Barton.x

[tomboy81]

Apologies for previous post. As you can tell, I'm feeling particularly grumpy today! Not being able to walk properly is really getting me down. Do the sore hands and feet calm down eventually? I'm resting, keeping them cool and obsessively moisturising with urea cream but they still feel as though someone has applied a blowtorch to them! I'm usually quite an active person and being almost immobile is really upsetting me....

[tomboy81]

Hi Barton. I completely agree! I get so frustrated when I see all of these Jeremy Kyle rejects wandering around town stuffing their faces with junk and smoking- they're all completely fine! It makes me so angry when I think of a friend of mine who sadly passed away at the age of 30 from BC. She was a teetotal vegetarian and one of the kindest ladies you could ever meet. There's no justice, is there? Anyway, rant over. This particular subject REALLY gets my blood boiling (as you can tell!) 😳

[Barton]

Marirose, sorry to read you are suffering so badly. I hope you can find some relief. Is it all summer you suffer with the heat and your MS? - so unfair you have to suffer cancer and MS! I know life isn't fair, but you can't help wishing it was! Why do all the good people seem to suffer whilst the wicked people (not suggesting for one second that everyone who doesn't suffer in some way is evil - not what I mean at all -I mean murderers, etc!) seem to get away scot free?

Hugs and best wishes. Barton.x

[Marirose]

Hi crusaders

Yes you are right Barton strong sun factor for all chemo girls and shade like hats. Remember this is a chemo even though you don't lose hair and you can stay on much longer than IV chemos. I am having a terrible time in the heat because it also effects MS I find I can hardly walk at all but I love the sun so much especially after the cold damp weather.But please be careful we already have enough to put up with.

Love and (((((hugs))))) xxx

[Barton]

Hello, Waffles. Yes, I believe you are right - chemo can make you extra sensitive to the sun. I don't know if sun screen can effectively block the effects, but it's worth a try. I would go for an extra strong sun screen, if I were you - factor 50.

Hugs, Barton.x

[Waffles]

Hello Cape Crusaders,
I've just bought myself a camping chair to sit out in the sunshine as my skinny bum doesn't give my bones enough padding to sit on the grass anymore. However, I think I remember reading somewhere sitting out in the sun isn't that good for you when you are on cape. Does anyone know anything about this or am I just imagining it. xxx

[tomboy81]

Haha! I love the "cape crusaders" idea! Can our costumes be a loose fitting cotton though? (I don't think I'd look very good in tight Lycra) Plus, it wouldn't agree with my hot flushes... 😀 I'm currently putting my poorly feet up whilst enjoying some tea and cake. Sent the other half out to do the food shopping and to get some urea moisturising cream. Maybe I'll get him to massage it in later. Oh, well- I may as well use this rubbish situation to my advantage!

[Marirose]

Cape crusader it is we will have costumes next.

Morning crusaders

Ellie you are so right about twinges I was getting loads of twinges in my tumour area around the 6 cycle mark and I thought it wasn't working only to find the tumour had shrunk by 9mm the first reduction I had plenty of stables but the first positive on cape.

So the peachy soldiers were working long may it continue.

Love and (((hugs))) xxx

[Barton]

Love it, Ellie! I will definitely now consider myself a Cape Crusader!

Hugs. Barton.x

[EJ81]

Good to know waffles, thanks. You're right about twinges. I have liver Mets too and I've had twinges when chemo is working. Iu feel pressure when they've been misbehaving.
Tomboy81, hi sis! Yes you guessed right with the 81 - I wasn't feeling too inspired when I had to pick my username but it feels wrong to change it now. I've just had my last eribulin so don't start Cape until the 25th but I'm really thankful for this thread already.
Love to you all my Cape crusaders (see what I did there 😉 xxx

[Waffles]

Hi Tomboy and EJ81,
My main tip is to always take Cape 20 minutes after food. I started out taking them shortly after food and I ended up with a lot of stomach discomfort.
Tomboy I also get twinges in the liver area but to tell you the truth you can get pain under right rib if your stomach is irritated too. Anyway, I had a stable scan after suffering twinges and aches in bone met sites and under right rib (I have liver mets) after 4 cycles of cape. I had suffered  a lot of progression on previous failed hormonal treatment. I'd certainly mention to the onc about any pain but I just wanted to reassure you that not all pain is a bad sign. Best wishes xxx

[tomboy81]

Hi EJ81. I'm pretty new to the group too (I've been on cape for just over a week) Sending a big hug to my cape newbie sister! I think we must be the same age too judging by the "81" (I'm 35) Thanks to everyone for the tips- keep em' coming! I have liver Mets and have been getting twinges in that area over the past few days. I hope that means that the peachy warriors are doing the trick! Happy Friday X

[EJ81]

Thank you for the welcome and all the tips. I will have to get better at drinking more. I'm really nervous about my feet being painful as I have Lymphodeoma in both legs which makes my feet swell. Last summer it was really bad and it's been so. Much better lately I don't want to be hobbling again! Especially as I currently work mornings as a TA so I'm on my feet a lot.

I've been reading back through the thread a bit and love the idea that sea water can help as I'm desperate to swim in the sea again now I'm picc free.

Barton I did briefly have a port but I was really unlucky as it got infected after about a month and got so bad it had to come out again only two months after it went in! I think it was pretty special going by the doctor's reaction and the fact they sent for the medical photographer!!

Ellie. Xxx

[Marirose]

Dear Barton

you are a gem with your tips I do listen and take your advice yesterday was a bad day for enjoying the hot sunshine my hands (touch wood ) are not sore and the skin on the feet is in very good condition although the soles do get red and my big toes seem to suffer. On E/E combo the toe was looking like an in growing toe nail now the other toe looks like going the same way but hopfully the summer is coming and I will be able to wear open sandles

But the cream from Aldi with 10% urea for £1.99 is great as it is only a promotional item when it's gone it's gone. Hubby went and bought a load from another Aldi because our's sold out so now we have loads hope they don't take me of cape too soon other wise I shall have to stand on the street selling them.

Another good tip I read was to soak your feet in cold water which I did when we had 2 days of hot weather it felt pretty good and they said to pat dry not rub.

Welcome to our thread Ellie I hope you manage to cope with the side effects ok Waffles still manages to continue with work.

Love and ((((((hugs)))))) all Peachy Warriors xxx

[Barton]

Tomboy - sorry to read you are suffering badly (you too, Marirose). May I suggest drinking loads - as I have said in my post to Ellie, it really has helped me. I still get sore fingers, but not as bad. A tip for sore fingertips - get some Savlon, put a dollop on each finger tip at night and cover with fabric plasters. Leave on overnight, and, after a couple of nights, your finger tips should be a lot better.

Hugs. Barton.x

[Barton]

Oh Ellie, how on earth did you manage with a PICC line for 2 years? That must have been hard. Did they not offer you a Portacath? They are so much easier! I had one when I had my IV chemo in 2011, and it was marvellous. Would definitely go for one again if (when?) I have to have IV chemo again.

Top tips for Cap - moisturise, moisturise, moisturise! I have to admit to being rather lazy with that, and suffer if I leave it too long. However, I have found that Nivea Express Hydration body lotion is  great  for hands and feet -  you don't stay tacky for ages, or slip around in your shoes (which I did when I was using Vaseline - had to make sure I used it when I wasn't going anywhere).

And the other main one is to drink plenty - I have been having to for another reason, and it has helped keep my hands and feet much more stable.

And remember, although it is an oral chemo, and therefore "easier" than IV chemo, it is still chemo. So take care, and rest when you need to.

Hugs and good luck. Barton.x

[EJ81]

Hi Ladies.
I'm due to start Cape in a couple of weeks so I'm just dropping in for some tips. Looks like I need to get a bucket load of moisturiser!
I had really sore hands and feet (mainly from my nails) when I was on Taxol and Avastin so I'm hoping I get off lightly this time as it was so frustrating. On the plus side this is my first tablet chemo so I am finally free of my PICc line after 2 years!
Ellie xxx

[tomboy81]

Hi Marirose. I'm with you on the sore hands and feet! I'm also very grumpy despite the sunshine... I've been on cape for just over a week now and the soles of my feet are really painful! I've been telling people at work that I slipped down the stairs because I'm hobbling around like an invalid! I've been moisturising my feet a lot and trying to keep them cool but is there anything else I could do? Top tips welcome....

[Marirose]

Hi Peachy Warriors

Thank goodness I am on my free week I can get a lay in well at the weekend. I am having an awful time today with hands feet are ok but the hands are so red and I cannot feel things right with my finger tips. I also get neuropathy in feet at times.

I am really suffering in the heat and I love the sun but it effects the MS. I feel useless I cannot do gardening for very long without sitting down and my back is now aching like mad.

Then the cooking I cannot open simple things like flip lids or unscrew bottles.

There I've had my moan I hope you are all doing fine and enjoying the warm sunshine we get very little of it and now the weekend is near it is changing again.

Love and ((((hugs)))) xxx

[Waffles]

Hi Tomboy,
I work four days a week at the moment and I am on my 7th cycle of cape. I am lucky to have minimal side effects so can work without any problems. I love my job which is a marvellous distraction for me . I find that as long as my pain is under control I can cope with most things and some days I don't even think about my health. (However, last week I suffered a few days of unexpected back pain and my mood dropped very badly during that time bUt I was still able to work).
Do you have to go abroad and do your bosses know about you health?
I think as long as you feel well and want to work abroad you should.It sounds like even if you went to Eastern Europe you could return quickly to get any treatment required. However, it would certainly be preferable if you could wait to see how you cope with the side effects before you go abroad. Most importantly, don't go just to try to prove to yourself or others you are still like you're old self. Only go if you think it will make you feel happier.. Best wishes xxx

[mazurka]

Hello Tomboy81 - welcome (you know what I mean).

I can't decide about your central Europe job option for you either, but if it were me I would be tempted to do it - because, perhaps like you, my worst times with this b"£$%y disease are when I am unable to be my normal self.  How long an assignment is it, or it is open-ended?  Can you reassess it in say six months without people getting ratty?

As has been said the fantastic thing about cape is that it is pills not IV.  This reduces the time on appointments and fits so much better into a working life.  But at the end of the day it is chemotherapy and I suppose you have to respect that fact - even though I find it very hard.

I reckon I work 3/4 time or so, and I am in my sixties now so that's not so unusual among "well" people.  It certainly isn't among my firiends.  There are very few days when it is a real struggle though I can find it hard to get going in the morning.

The main thing is to hope that youer side effects are mild and manageable as seems to be the case for a fair few of us on here.  And, of course, that it works!

Good luck

[tomboy81]

Thanks Marirose. I'm really grateful for all of your support through such a frightening time xxx

[Marirose]

Hello tomboy

Welcome to our thread we are a like a family on here. One of the ladies who in no longer on cape called us an army with peachy soldiers that go into battle on the "C".

Alas she had progression and changed to E/E but I had progression and came off E/E onto cape and my scans have been great with the last one showing the tumour has shrunk from35mm to 26mm.

Barton is our mainstay she gives lots of good advice as she has been on and off cape and like she says you will find it a help reading back posts I did when I was first on cape and found it useful with the side effects and working Waffles still works as well but I am retired.

But do ask moan rant and rave if you need to we are all here to help when we can.

Love and (((hugs))) to all our peachy warriors xxx

[tomboy81]

Thanks Barton. I found your post really comforting. It's good to know that working whilst on cape is doable and that people have managed many years on this treatment. I start tomorrow and will keep you posted on my progress. I hope the peachy warriors will do their trick for me!

[Barton]

Hello tomboy, welcome, but sorry you have had to join us. And of course we don't mind you joining in! I won't go through my story again (just read back a few posts), but just to say I have been on Cap a little while. As it is an oral chemo, it is much less restricting than having to go to hospital for IV chemo, and is said to be easier. It is easier, but don't be under the impression that it is easy. It is still chemo, after all, and, as such, designed to attack parts of your body, unfortunately hitting the good bits as well as the bad. We can only hope that it hits the bad bits harder than the good bits

I read your post first thing this morning, but had to get ready for work so didn't have time to reply then. I do hope you managed to get some sleep inbetween 4am and now!

I can't answer your question about whether you should take the new job, but I can say it is possible to do Cap and work full time. I did that my first lot of cycles. It was hard sometimes, but doable. That said, my job is not particularly stressful. I don't know if I could have coped if it had been. I do work part time now, but that is partly due to my employer changing my hours (with my agreement), and partly due to other health factors. I have, this week, reduced my hours still further (to 16.5 per week) - my choice, again.

Whatever you decide, good luck, and keep in touch.

Hugs to all. Barton.x

Ps - many people have lasted years on Cap.

[Carolyn52]

Hiya and welcome to the family . Glad to see that others are awake at silly o clock too.
I have no experience of cape and so will leave the experienced members to reply.
Welcome.
Hugs xx

[tomboy81]

Hi ladies. Mind if I join you on here? Scan results today showed a "significant change" in my liver (backed up by blood test results) Strangely bones are improving!? Starting cape on Thursday after burning through tamoxifen, anastrazole and e/e in the space of 17 months! Sadly none of the hormonals seem to have worked for me. I'm really scared about the future (hence posting at crazy o'clock!) Despite continual bad news I feel physically well and continue to work full time. To add to my worries I'm meant to be taking up a position with my company in Central Europe in 3 weeks time (I'll be given a private GP over there but healthcare remains directed by my London hospital) I'll be flying back regularly for scans, appointments etc. Now I'm wondering if I should continue with my plans- will I be able to manage this on the new meds or will a change give me a focus away from bl**dy cancer? I'm just so worried about everything right now. If only I could get a decent night's sleep which might put some perspective on things... Bah! Lots of love to you all xxx

[Waffles]

Hi Mazurka,

Sounds like you had a lovely holiday.  I know  that  honey dressings are now being used as treatment for wounds that won't heal in some hospital clinics. It is an ancient remedy that is now being adopted by modern medicine. So it is no wonder your cream is effective.

Hi Rachel,

I've been on Cape since December following serious progression in bones and appearance of small mets on liver when exemestane failed to work. I had a stable scan in March which I wasn't expecting given the rate the disease had been moving at before Cape. I have a number of side effects but luckily  all of them are  minor. -runny nose, constipation, going off some foods, slightly blurry eyesight. My feet and hands are leathery and deeply lined but I  only seem to get small hacks in fingers that heal on week off. Runny nose can be very embarrassing and constipation a bit uncomfortable but that's really the worst of it .

Best wishes xxx

[Marirose]

Hi Mazurka I am glad you have had a brilliant holiday it's just what you need when going through treatments on this horrible disease. I was interested that you found swimming in the sea a big help I have read that a Japanese man healed himself from cancer one of the cures was soaking in hot mineral springs could the salty sea water help???? it makes you think. I am on my 8th cycle 1 week over tomorrow.

Hi Rachel I started last November but I have had 3 weeks off due to a concern that my skin mets were increasing so I stopped cape while they did a scan and we found my main tumour had shrunk from 35mm to 26mm and everything else stable.It did help my hands to recover from being very red and although I was not taking the cape my hands began to get splits they soon healed and have not come back.I was also interested to hear about your new ointment. I have just bought some handcream with beeswax for hands nails and cuticles I just keep buying different hand creams because I get through quite alot I usually look for creams with vitamin E in and urea but I have now stopped paying silly money out there are lots of cheaper brands out there.I have bought foot cream from Aldi with 10% urea I bought loads as it was £1.99. Just hope it works.but it was one of those on off sales but I have used the face creams from Aldi before because I read in a paper how Aldi facial creams were very good and I agree.

Oh and my eyes get terrible at times and it is due to cape I had some eye ointment prescribed last week and I hate it.My nose dribs and gets sore too.

Hello Barton I always love your posts regarding the cape you have so much knowledge I know you have been taking cape on and off and during the time when our lovely Belinda was around.She was an inspiration to us all she did 3 1/2 years on cape.

Well good luck to all our peachy friends love and (((hugs))) xxx

[Barton]

Hello, Mazurka, glad you had a good holiday and enjoyed yourselves thoroughly. Hope the feet aren't too troublesome. Just a small point - putting pressure or heat on your feet encourages the Cape into the skin - it seeps into the very small capilliaries and that can cause the problems. Rolling a tennis ball under your feet puts added pressure on them (and all that walking you did on holiday). You might find it eases off now you are home again (unless you still do loads of walking, of course!).

Hello, Rachel10, thanks for the tip re the olive oil, honey and beeswax cream - I will keep it in mind if my hands get that bad. Great news for you re the Cap working! Well done!.

In answervto your question, I have been on Cap for 5 cycles (just coming to thecend ofvthe fifth cycle on Thursday morning) thisvtime round, so 15 weeks this time. I started on Cap in July 2014 originally, however, and did 7 cycles before having to have a rest of about 9 weeks because of severe breathlessness. I then went back on it for another 3cycles in the first part of 2015. It had worked so well for me then that my Onc took me off it and put me on Exemestane instead. I was on that for a few months, before progression to my bones (still very small mets, very hard to see, apparently) in late 2015. Due to other health problems (Osteoporosis possibly due to my original IV chemo in 2011, then 3 years of Anastrozole), I was not started back on the Cap until the end of January this year. I hope this answers your question. I am doing much better, with far fewer and milder side effects, this time around.

Hugs to all. Barton.x

[Rachel10]

Hi everyone, I have been taking cape since November and so far have been OK but have had some trouble with the skin on my fingertips. We went to Crete over Easter and there was a guy there (in a car park near vie  beach) selling olive oil, local honey and this beeswax ointment. Until then nothing had made any difference to these cracks appearing in my fingertips. But my husband bought a little pot of this stuff - it is amazing! My fingers have actually healed! I think you can get beeswax products here - it might be worth a go on hands and feet. It worked for me. 

I have also also been getting sore eyes lately. Until I read these posts I didn't realise that might be the cape as well! 

All worth it though: cape does seem to be working as my tumour markers have dropped in the last few months (although have stabilised at a higher keel than I'd have liked!). 

How long have others been on cape? 

[mazurka]

Hello Everyone - Sorry, I have been off for a long time because I have been too busy.  Which is good news.

We had a brilliant holiday, before and during which I had a total of three weeks off the Cape because I wanted my feet to be in good condition.  It worked out well and I could walk almost as much as I would have wanted, which is a lot.  Then, while we were away, I started cycle 9, on 50% of my original dose, and things were very good till about day10, by which time we were home.  I did loads of sea swimming and the sea water seemed to help a lot.  Bowls of salt water since I have come home haven't had quite the same pleasing effect, but that is at least as much to do with not being on holiday any more!  Since we came back I have been working pretty hard.

I'm now 3/4rs of the way through cycle 10 (still on 50%) and it is OK, but I am having rather more trouble with my digestion than previously which is a drag.  My feet are a bit dodgy but not as bad as before I reduced the dose. I have got better at looking after them by using dressings on places that might get sore before anything happens, as well as continuing with loads of different creams (latest are Hydromol, diprobase and Body Shop Hemp cream for feet - all fine, but nothing startling).  I have got a range of thick (and ugly) socks from M&S which I wear with sandals when I possibly can.  My toenails, however, are not a pretty sight (where they still exist).  

A scan a couple of weeks ago showed no meaningful change on the liver mets, but I think it will be the next one that will tell us whether I can get away with 50% dose or whether the Cape is not effective at that quantity/at all.  I have my fingers crossed.  Up to now I have not been too terrified of the scans.  I find them nerve-wracking but I tend to rely more on how I am actually feeling.  For anxiety I am on a low dose (10 mg a day) of Citalopram.  I think it has helped me, as has a course of CBT.

Oh those runny noses - Waffles, Barton, Marirose; I have it a lot.  The funniest, in a way, is when I am snivelling on public transport and people back away.  It makes me want to wear a placard saying "It's YOU PEOPLE whose bugs I need to avoid - you won't catch anything from me".

I have had the occasional bit of sickness, Marirose; domperidone deals with it fine for me, as does my now quite serious mint humbug habit (which the dentist rightly disapproves of).

The jury's still out on acupuncture as a help for my feet but I am keen to keep trying things. My pilates teacher has recomnmended rolling my feet around on tennis balls, which undoubtedly stimulates the circulation and has some positive effect on peripheral neuropathy.   I feel that the oncs don't take enough interest in alleviating the side effects of these common drugs - if you could keep people on them for longer by making them more tolerable, it might not be a glamorous breakthrough but it would sure as hell improve our longevity and our quality of life.

Touch wood I don't think I have ever had any adverse effect whatsoever from denosumab.