Member
Posts: 498
Registered: ‎01-05-2012

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Carolyn welcome back. I know you are aware I am not on cape now but I regularly read to see how people are doing.

I am so pleased it is working for you long may it continue.

Linda
Community Champion
Posts: 8,325
Registered: ‎26-10-2015

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello carolsue
I was so nervous about starting cape although I had friends that coped well with it as it's a big step on from.letrozole ..but after taking exmestance and everolimus for 5 months ..anything would be easy ..they were the devil pills.
I'm just finishing my 4th cycle Saturday and get a weeks break from the peachy pills. .but always feel tired without them and to be honest glad to get back on them ! I've oiled my hands and feet twice a day. .so no problems but I do wear sketchers a lot which are soft and bouncy!
Best of luck with the new regime. .you will be fine.
Xxx
Member
Posts: 1
Registered: ‎01-11-2018

Re: Xeloda / Capecitabine - Your Top Tips, please?

Thank you for the encouragement. I am beginning xeloda in a few days and frankly was worried about the side effects. This has given me some peace. I've taken taxol in the past as well as herceptin for 10 years for her2nu+ metastatic breast cancer. Thanks again for the cheerful attitudes. Blessings to all.
Member
Posts: 353
Registered: ‎26-07-2014

Re: Xeloda / Capecitabine - Your Top Tips, please?

Welcome back Carolyn! So glad to read that you are back on the forum and your son's wedding went so well. Family is everything when the chips are down, aren't they? Cape seems to be working well, so pleased for you.

I called Cape a wonder drug when I was on it! I had very few side effects and it worked for 2.5 years as it has for many others. I think because it is called chemo we expect it to be brutal but I much preferred it to my current trial drugs. Wishing all the Cape crusaders many more months of good results x

Community Champion
Posts: 8,325
Registered: ‎26-10-2015

Re: Xeloda / Capecitabine - Your Top Tips, please?

Supergirl.pnghere we are ladies. .superwomen. xx

Community Champion
Posts: 4,507
Registered: ‎01-05-2012

Re: Xeloda / Capecitabine - Your Top Tips, please?

How lovely to have enjoyed your sons wedding Carolyn. As you say, something maybe a few months ago you didn’t think you’d be able to. I have been in that situation many a time and somehow my treatment has been far more effective than I ever thought it would be at the time.  So there’s always hope. And you now have the twins birthday to look forward to as well. Our grandson was 1 a couple of months ago and it was so nice to be part of this landmark. Apart from the joy he brings me (well, except for this morning when he is here and causing havoc as ever!)  he also brought great joy to my Dad and that is a big comfort for all of us at this sad time. Thanks for your kind wishes. 

I hope your recent post is one of many and it’s good to see that you are tolerating Cape so well, it is quite the unsung hero of the chemo world!

Nicky x

Member
Posts: 1,589
Registered: ‎01-05-2012

Re: Xeloda / Capecitabine - Your Top Tips, please?

Really good to see you back Carolyn. Glad cape is working for you.

Bon xx

Community Champion
Posts: 8,325
Registered: ‎26-10-2015

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hiya Nicky
Thanks for the welcome back. .thought it about time I put my community champions hat on again and brought this thread back to a bit more active as I think cape is one of the most popular treatments for so many of us . There will be ladies reading and scared of starting them maybe. .I was petrified but can honestly say I feel so well on them.
Sorry Nicky to read that your lost your dad ..its always hard to loose a parent. ..we always think of them as immortal.
Last week my son got married and we had a fantastic weekend staying at the venue ...it was a landmark I didn't think I would make a few months ago. Next focus is the twins first birthday in a few weeks. ..
Well cape ladies. .hope you are coping as well with this regime as I am ..early days and no doubt I will be moaning about side effects soon but at the moment whoop whoop for cape !
Community Champion
Posts: 4,507
Registered: ‎01-05-2012

Re: Xeloda / Capecitabine - Your Top Tips, please?

How lovely to see you back on the forum, Carolyn, you have been missed - a lot! So pleased you are getting good results for Cape as well,  I do hope you managed to celebrate.

Nicky xx

ps I was about to PM you anyway but saw you had been on here already so that was a lovely surprise xx

Community Champion
Posts: 8,325
Registered: ‎26-10-2015

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello

Lots of the regulars will remember me taking a break from bone mets thread as I had scan results which were a bit scary and I felt the need to pull away for a while .. but I'm now joining you cape crusaders on this thread.
I'm on my 4th cycle of cape and weird but I feel really well on it ..in fact I hate the week off when I get tired and grouchy !!
I have been oiling my feet and hands twice a day. .no. probs and dreaded the trots but no probs. The only big thing I get is hunger. .I'm eating a meal and thinking of the next one! ! Ha ha.
I had a scan after 2 cycles which showe'd reduction and stability on lungs and liver which I was delighted with. It could take longer on the brain mets but holding out for results with that too.
So hoping all your other ladies coping as well. I'm on 1600 X2 a day dosage.
Member
Posts: 1
Registered: ‎26-10-2018

Re: Xeloda / Capecitabine - Your Top Tips, please?

New to this group, have been on cap since June. Was on a trial of ribo for 6 weeks that dried out my lungs and saved my life. Then developed liver problems so was taken off the trial. Cap has been tolerable except for painful fingertips and toes, and metallic tasting mouth. This week is up and down and I have another week to go. What comes after Cap?
Member
Posts: 1
Registered: ‎22-10-2018

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Graceland girl .I've just joined the group and was interested in the fact that you've just started cape treatment.  I finished 5 cycles on it about 8 weeks ago and though I was really ill after the first one (dose needed lowered) after that  I stayed well.  Did buy into taking special honey to prevent nausea though.  My sister had heard about it on breakfast tv.  I've never coped well with the prescribed anti-sickness meds and the honey really worked for me.  I'm seeing my oncologist next week to see what effect the treatment has had and I'm keeping very positive about it.  Diagnosed with my secondaries March this year 5 years exactly after my initial cancer.  The battle continues!!!!

Member
Posts: 609
Registered: ‎10-10-2012

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello Graceland Girl and welcome. Are you an Elvis fan.
I am also on my second cycle of Capecitabine. My dose is 2000 x 2 daily, Onc said he wanted me to start on a low dose because Cap can cause diarrhoea and I already have some gastrointestinal problems so didn’t want them to worsen. I seem to be doing okay- my platelets were a bit low after my first cycle, but they did another blood test and they had risen to an acceptable level so he prescribed the tablets.

I was first diagnosed in 2012, then just a few weeks later they found the secondaries - had almost five years on letrozole but then some progression in peritoneum. Tried E & E which didn’t work, then pacitaxetol which kept the TMs stable for the duration (16 weeks) but TMs went up straight after. Tamoxifen caused awful UTIs so am now on Cap.

Like you I find that my energy levels are lower but still manage to lead a fairly busy life and go for a walk most days. Glad you’re buying again, I was a little like that at initial Dx but we all find our new normal and I treat myself now..

Good luck with Cape- keep us informed

Take care

Best wishes to all the other Capers - as George puts it

Xxx
Member
Posts: 94
Registered: ‎16-01-2014

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello Graceland Girl
Sorry you find yourself here , I can’t believe your surgeons attitude ! Let me tell you I’m coming up to my 5 years in November- diagnosed with secondary from the outset . Bone and liver mets .The liver has cleared over the years ,unfortunately now in the lung. But still here and living life . Be kind to yourself and keeping buying ! X
Member
Posts: 74
Registered: ‎28-06-2013

Re: Xeloda / Capecitabine - Your Top Tips, please?

Welcome though sorry you find yourself here. What a fab attitude you have especially in light of unwelcome prognosis from idiot onc,

Take care, wishing you a long time on cape.

xxx

Member
Posts: 6
Registered: ‎18-10-2018

Re: Xeloda / Capecitabine - Your Top Tips, please?

I haven't used this forum before, so I hope Im using it correctly. I had intravenoue chemo for about 12 months but was taken off it due to my blood not recovering. I went on to tamoxifen but the TMs and scan showed it was no longer working, so I'm on Cap now. I'm on my 2nd cycle on max dose of 2300 x 2 daily. I don't feel too bad, just lacking energy and the sole of my foot feels very tender. Its very comforting reading other posts as I don't feel so alone in coping with incurable cancer. The saying "Living with Cancer" rather than "Dying from Cancer" is something that I think about every day. I don't think this disease has stopped me from doing anything I would normally do...except I dont do so much housework ! But I still enjoy cooking and eating, although I dont seem to be able to eat as much as I used to ! My original breast cancer was diagnosed in 2011 and I had a lumpectomy and radiotherapy. Although I continued to have mamagrams that were always ok, in 2016 after a visit to my GP she discovered  lump under my arm and after tests it was shown to have spread to my liver and was inoperable. The surgeon was very offhand when he gave me my diagnosis...with a shrug of his shoulders he said I had 2 to 4 years survival. That stayed in my mind and all I kept thinking was there was no point in buying new clothes or planning for anything as I probably wouldn't be around. I have since been told that I shouldn't have been given a time limit as no one knows and everyone is different....so now I've started buying again !   

Member
Posts: 328
Registered: ‎28-01-2016

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Lynn

Yes, Galway can be very wet. Fortunately, we were lucky with the weather. Off to Liverpool later today.😊
Thanks for update. Your treatment sounds very much like my own. I was on E&E for 3 months and had the worst side effects of all my treatments; it really didn't suit me at all. I then went on to Taxol, but had progression so went on to Tamoxifen for a few months which did give me leg pain. I have currently been on Cape for nearly 14 months and it has kept things stable although TMs are starting to rise slightly. Scan due this month so will see what that shows. 🙄
I too, initially, suffered with big D which did ease up after dose reduction. I am currently on 1,800 x2. At one point, my dose was reduced to 1,500 x 2 but onc increased dose after weight gain- I did try to blame chemo for that but onc was having none of it so need to look at real culprit-chocolate🤣My white blood count also fell during initial treatments; however, things seemed to have settled.
Good luck with cycle 2 and keep us posted.
Enjoy the rest of the weekend

George x
Member
Posts: 609
Registered: ‎10-10-2012

Re: Xeloda / Capecitabine - Your Top Tips, please?

 

Hello again - glad u had a good trip George, I’ve been to Galway twice and it poured with rain both times.  We found good places to eat both times and had lovely evenings though.

 

I started my cape three weeks ago and have just started my second cycle- the first one seemed to go okay, not much in the way of SEs.  Saw the Onc on Friday for my second cycle and he said that the bloods I had done showed low white blood platelets, he asked me if I would be willing to wait around at the hospital whilst they repeated the test, which I did and they had gone up enough so he gave me my second prescription.

 

Also gave me my scan result which was a bit daunting, it appears that the bone mets in my spine have infiltrated the bone marrow, which could be why the platelets were low, also the peritoneal mets are more apparant.  However he did say that this scan is a baseline to see how the cape affects things...I had it just as I was starting my first cycle and had not had any treatment for 6 - 7 weeks.  I was on Zomera and Letrozole for almost five years which reduced my TMs and also kept them stable.  Since then have tried E and E which had no effect.  Pacitaxetol which kept me stable for the 16 weeks duration but when I stopped my TMs increased dramatically- also tried Tamoxifen but the side effects were awful so I had to stop it.  

 

Yesterday morning I had awful diarrhoea but after taking a couple of imodium it has been okay since.  My eyes are a little sore, red and dry, but I understand that can be a SE as well.  Really hoping that I can get some stability with Cape

 

love to all, hope you’re all as well as you can be.

 

xx

Member
Posts: 328
Registered: ‎28-01-2016

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi TB63

Had a lovely time in Galway although struggled to keep up with cousin on drinking score 😊It is a great city with a lively vibe. The latin part is full of bars, restaurants and independent shops. I also 'pretend' I don't have Sbc while on holiday so keep away from sites that might remind me ( Hope that doesn't sound too daft). Next jaunt is Liverpool on Sunday for few days, talking mum as a birthday treat. 😊
SEs remain the same and waiting for a CT scan date🙄Also, onc cancelled next app as he will be away so trying to sort another appointment with his secretary who is totally useless, no understanding of stress involved when routine is changed. Oh well, moan over.
Hope all well with you and other Capers. Have a great weekend 😊

George x
Member
Posts: 8
Registered: ‎02-08-2017

Re: Xeloda / Capecitabine - Your Top Tips, please?