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Xeloda / Capecitabine - Your Top Tips, please?

Member

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

Morning Carolyn

So sorry to read this. She was so welcoming and give me good support when I started cape last October.

RIP Fran
Member

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

Hello Carolyn, I am so very sorry to read this, and for your loss of a lovely friend. I never met Barton but as you know I was very fond of her and I missed her greatly when she stepped back from the forum. Sending you, and her family and friends my condolences. RIP Fran xxx

Member

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

Oh Carolyn, so sorry to hear this sad news about Barton. As you said, she will be at peace now. Please send regards to family and let her sister know we are thinking of her.

xx

Member

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

Hello ladies
Well this is a post I am not looking forward to writing but I think this is the better place :

BARTON (fran ) passed away at 10.10 pm last night and I know a lot of you will remember all the help she gave over so many years here. We met regularly for coffee and cheese scones and I am so honoured to have had her kindness and friendship for 2 years . I will miss her so much. Her chemo stopped working May 2018 and she has been living a very quiet private life with her devoted sister Trish giving 24/7 palative care .
Rip lovely lady ....you will be missed. .fly high and pain free 💟💟💟💟💟💟
Member

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

Hi Everyone, after seeing my Onc last Friday she went ahead with my 3rd prescription of Cap as the side effects had cleared up after delaying the 3rd cycle.for a week. I thought she may have reduced the dosage from the max of 2150 mg x 2 a day. But she wanted me to carry on with that dose, I'm feeling ok but only in to the 4th day. The Onc said if I feel bad again to ring the Hospital for advice. She said I should have done that before, but I hadn't because I expected to feel yucky.

My TMs had gone up quite a lot but the last 3 blood tests that were taken didn't register if the TMs had reduced so I had another blood test last Friday and will get the results at my next review.

Lynnq, I'm pleased to know there is another Elvis fan on here. Did you go on the Candlelight Vigil ?I've done that twice, it was very moving. Had to stand in line for hours to get to the Gravesite. It was beautiful and the floral tributes lined all the way up the drive to Graceland.

The skin on my fingers have started to crack and bleed, but I can put up with that. I do feel very uncomfortable after eating a meal, I know I should have smaller portions, but the trouble is I haven't lost my appetite ! Its encouraging to read all your experiences whilst on Cap. I'm pleased that most of you seem to be coping well on it. 

Until the next time.....love Carolyn

  

Member

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

Hi George

Pleased u have been having a good time holidays etc. Regarding CT scan do you get injected with a dye? I do so it is always hunt the vein. Never been given a jug of water to drink.

The hospital I attend only give paclitaxel taxol for short for 18 weeks maximum I asked the nurse last week at the chemo unit. By a year don't think I could cope having it for that long.

Hope it went well today.

I will pop in every now and again to see how the cape crusaders are getting on.

Linda

Member

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

Hi Lynne

I was only on cape for 10 month before it stopped working. Thank you for the explanation regarding UTis. I used to suffer alot of cystitis when I was young. Hope I don't get it again. Will just have to wait and see.

Before cape I was on EE for 3 years 8 months. I was lucky I did not get any problem with mouth ulcers etc.

Good luck with

Linda
Member

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

Hello George

Nice to hear from you and what an inspiration you are to us cape crusaders. ..all those holidays ..just keep enjoying them ..
I read somewhere that oncologists strongly believe now that a few months on E and E help the cape work better ..but I wish I had cape rather that waste 5 months on e and e which I think fed my mets rather than helped them!
Hope this great thread becomes a nice daily thread with lots of friendly banter. .I know cape is one of the most popular regimes so ladies stop just reading and join us with a hello at least.
☺☺☺☺☺
Member

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

Hi Lyndyloo, thanks for thinking of me. Sorry I have been a little quiet lately - due to the fact I have been enjoying myself with lots of mini breaks, theatre and cinema trips. I just wanted a bit of a cancer holiday. However, back to reality as, at this moment in time, I am in a waiting room with lots of others preparing for my CT scan by drinking a big jug of water ( shame I couldn't slip a little drop of gin in to my glass😂). The original.date for my scan was the end of October, but i postponed it as I had some little treats planned that I didn't want to cancel and i am sure a few weeks won't make much difference. I will get the results, along with 2 sets of TM readings 2 weeks tomorrow🙄Regarding TMs mine have always been super reliable. I am a little anxious as they have been rising, slowly but surely, since May. However, I can't complain as this is cycle 20 of Cape so I know my 'luck'will run out shortly.
Lyndy, I was on Taxol for a year and found it 'doable' although I did suffer from nausea and had to take anti sickness tablets. Apart from peeling hands and feet, which I have learned to live with, SE s have not been too bad on Cape. Another reason
I would like to continue with the treatment.
Regarding E + E combo, it didn't suit me either. I know a lot of women have had success with this treatment, but I wasn't one of them. I really suffered with mouth ulcers that made.my life a misery and TMs shot up when I was on E + E.
Hope all you ladies are doing well. It us good to see how active this thread has become again.
Have a good week all

George x 🤗
Member

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

Hello lyn
Nice to hear from you and that you are doing well. On cape too. . .I'm coping well and in fact I'm now on my week off and missing the peachy pills ..feel so tired so hoping my bloods are ok on Wednesday for cycle 5 to start .
I've never had tumour markers but might ask on wednesday if I should have them now.
When I was on E and E for 5 months I couldn't eat or drink either. .lost 4 stone ..but it's creeping back as I'm always starving on cape. .like a little gremlin thinking or eating food !! Says me munching a veggy pizza right now! Oink oink 🐖🐷🐽
Member

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

Hi Lyndyloo

 

UTIs are Urinary Tract Infections...cystitis etc.  I am prone to them and have Interstitial Cystitis which flares up periodically so we were almost expecting them.  We were on holiday at the time and I was just four weeks after IV chemo (pacitaxitel) ... it was very hot and I wasn’t coping with the heat too well, nor resting enough.  We really should listen to our bodies shouldn’t we.

 

there are a couple of ladies who attend the support group who have had good results with tomoxifen so hope you do as well.

 

how long were you on Cape for, and thanks for the reassurance re tumour markers, 

 

x

 

Member

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

Hi Lynne

I am due to start tamoxifen tomorrow. Can I ask what are UTIs?

Regarding tumour markers I was the same last September they were about 300 when on EE which stopped working. Had a month off before starting cape tumour markers went up to 1000. It was quite scary I remember. It is good that they dropped quickly.

Like you my markers were a good Indication when treatment is working.

Lobda8
Member

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

 

 

  Hello everyone.. have just read through all of the posts after a few weeks absence.

I started on cape about six weeks ago and have just started my third cycle.  Not many side effects and the ones I have are manageable so far.

just wondering if anyone has had a Tumour marker experience like mine.  I have had SBC for almost 6 years and during that time TMs have always been a good indicator for me.  Onc tells me not for everyone but in my case he believes so.  

Anyway TMs started to rise about a year ago.  Stopped Letrozole and started E& E combo which didn’t work, they continued to rise.  I then had 16 weeks of Pacitaxitel, my TMs stayed at more or less the same level for the 16 weeks - didn’t decrease much at all.  They were 229 at this point.  I tried Tamoxifen but only for about three weeks the UTIs were horrible...still getting over them now.  Then for  7-8 weeks I had no treatment.  When I next saw Onc they had increased to 1209...a rise of almost 1000.  I was shattered.  Then last week after just 2 cycles of Cape they had decreased to 288.  A huge drop.  I asked the Onc if the spike could have been a mistake, he said that because I had 8 weeks with no treatment he thought that could have caused the huge rise.  After the first cycle my white platelets were a bit low but after another blood test  - done there and then - they had risen to just over ‘the line’. so they gave me my second cycle.  I have 2000 x 2 daily.

 

the Onc told me that it wasn’t just the TMs which had improved but several of the readings had improved...I have always been a bit anaemic but that had improved etc. And my energy levels have increased, even did some baking with my grandchildren over half term. - all 5 of them - then took 4 of them to the cinema and KFC the day after...

 

so based on this we are assuming that cape is working for me.  It seems such a huge change in the TM numbers both up and then down - just wondering if anyone else had experienced this.  I am pretty cautious and don’t want to get excited too quickly.

 

 

Graceland Girl - what did the Onc say, has he and you decided to continue with the Cape.  I am also an Elvis fan, been to Graceland once..loved it.  We actually stayed at the Heartbreak Hotel.

 

Carolyn52 - wholeheartedly agree about E & E being devil pills, the mouth ulcers were horrendous, I lost so much weight as I found it difficult to both eat and drink with them.

 

Thanks for posting everyone

 

Lynne xx

 

 

Member

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

Morning George

Just wondering how you are getting on. I still read through most threads even though I am not on cape now. Have your had your scan yet? If you have I hope it was good news. I have had 10 cycles of taxol down to have 12. I noticed you have also had taxol how did you find it? I am now struggling to be honest.

Linda
Member

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

Hello ladies
Thanks for joining it's nice to hear from you and the side effects etc.
I start my fifth cycle next week too .. I have liver? Lungs and adrenal glands mets as well as extensive bone mets but my main worry is the brain mets as I agreed with oncologist rads on the brain was not really much help ..the stage they are at. Apparently cape does break through the brain barrier and there is hope it will stabilise them for a while. I have had them since March 2018 . My balance is a bit wonky and I have tingly tongue and face but I deal with it on a day to day basis. I am on a dosage of 1600 x 2 daily which I think is small but does give me a quality of life.
Member

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

Hi ladies,

 

I just wanted to say hello and join in the cape ladies chat x. I am on my weeks break, with my fifth cycle due next week.  All ok so far.  Feet ok, hands ok although I do moisturise every day to try and prevent soreness.  I was diagnosed nearly 3 years ago straight to stage 4, liver and hip and then 10 months ago brain mets.  WBR over 2 weeks , I was not prepared for how low that would bring me but I came out of the other side.  Positive thoughts to all of you xxx

Member

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

Hello all....sorry that after sending my first post and receiving lots of messages, I suddenly experienced all the side effects of CAP. Stomach pains, sickness, water infection and the feeling that my batteries had been removed. It all started on the 2nd week of my 2nd cycle.Consequently when I had my review the Onc decided not to give me my next prescription, but wants to see me again tomorrow. Most of the side effects have cleared up now and my batteries are slowly recharging.

To Lynnq, yes I am a devoted fan of Elvis ! I've visited Graceland 3 times, but doubt whether I'll ever make the journey again, but I do have lots of Elvis parties, which keep my spirits up.

I hope that the Onc will give me my next prescription so I can carry on with the treatment. As I was on the maximum dose she may decide to reduce it. A couple of girls I have spoken to at my support group had to have their dose reduced and one of those girls said her CAP was reduced when she suffered the same reaction as me on the 2nd week of her 2nd cycle. 

I hope all who are reading this post are doing well and i'll update you all after Ive seen my Onc.

Lots of Love Carolyn xxxxxxxxxx

 

Member

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

Thanks Linda
You have done so well on weekly taxol ..must be nearly over now. . Hopefully back to a hormone soon for you. Hospital ran out of the big 500 mg cape pills so I have all 150 ones ..it's loads to swallow. .think it's about 10 to make up the dosage.
But never mind ..should get new supply next week if bloods ok when I see oncologist next Wednesday.
For all you ladies reading. .hope you are coping well with the peachy pills too ...don't be shy ..post here and let us know how things are with you.

Xx
Member

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
Member

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

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

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

Member

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

Supergirl.pnghere we are ladies. .superwomen. xx

Community Champion

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

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

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

Bon xx

Member

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

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

Member

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

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

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

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

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

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

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

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

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

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

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

 
Member

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

Galway is beautiful! Love Ireland. x
Member

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

Hi TB63,

Chocoholics of the world unite😂Yes, do keep in touch and let us know how you are getting on. Always interesting to know how other countries do things.

Have a good weekend. I am off to Galway to visit family. Don't think I will be needing any sun cream 😏

George x
Member

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

Hey George!  Sympathise with the weight gain!  I'm up 16 kgs since going on Xeloda but am told it's my sweet tooth, too, that is the cause!  Stay well and I will keep in touch. x

Member

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

Hi TB,
Thanks for your reply. Good to hear Cape worked so well for you. I am sure ribo will too. Not sure of exchange rate, but it sounds expensive which is probably why there is limited access here. I have been on varying doses of Cape, ranging from 1500, twice a day up to 2,150 when I first started. The full dose was too much for me so reduced it. I am currently on 1,800 twice a day, a slight increase from earlier dose as I have put on weight-would like to blame chemo, but think it is down to my love of chocolate and cakes 🤣
Good to hear your SEs seem to have eased up.

George x
Member

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

Hey George, how are you?  I live in Australia so maybe the funding is different for ribo.  We did have to get a special authority to get it.  Glad u have heard good things about ribo - not much to read out there as it is quite new.  Xeloda worked very well for me for a long time - TM going up slightly after 18 months of Xeloda keeping them at the same level - but not enough to alarm the onco at the time.  It's the mets to the omentum that came this year that's prompted the intro of ribo.  I'm now taking ribo with letrozole plus xeloda. Onco had originally said you usually have letrozole with ribo but not if u are on any oother chemo so not sure why he has said to also stay on xeloda.  TM had increased at the visit 2 weeks ago (but had slowed down).  This was xeloda and letrozole.  We introduced ribo a week ago so in 8 weeks I will get an indication if it's doing anything.  The sore feet and hands is a side effect of xeloda - I didn't get that - but keep moisturising as it helps.  I asked the onco at the last visit if we could increase dosage of xeloda as I tolerated it so well.  He said no because that brings on SE with hands and feet.  I am taking 1500 mg of xeloda twice per day.  What is your dosage? x

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

Hi JanieB, the complex world of breast cancer!  I didn't have lobular bc to start with - it has always obeen oestrogen receptive.  When the mets came in the omentum earlier this year I asked my onco if it was a common area of spread (i.e. the omentum) he said no, but associated with lobular.  This takes me back to a convo I had with another colleague here in Australia (I live in Aus but am British - been here 32 years) and she was very much into the science of bc - she had it herself.  She explained that as bc metastasises the pathology can morph, meaning change.  So I am assuming mine has gone from oestrogen receptive to also lobular.  Capecitibaine (Xeloda) worked really well for me - 6 months of it gave me 18 months of stability.  The rbiociclib (also known as Kisquale) is pretty new.  I've just read another comment on here about funding in the UK - I needed special authority for it here in Aus - took a week - otherwise it's normally AUD $5,500 for a box ...  The SE in the first few days meant fatigue but this week not too bad.  I am taking it with Letrozole now.  Up to this year I was on Cape and Tamoxifen.  When the omentum got involved they changed the Tamox to Letrozole.  I was told Letrozole is usually taken with Ribociclib but if you are on other chemo you can't take ribociclib.  So not sure why 2 weeks ago the onco put me on the ribo with letrozole AND continuing on with Xeloda.  At the last visit 2 weeks ago (before introduction of ribo) I was on Xeloda and letrozole and the markers had increased (but slowed down from the last test) so I think onco is hoping ribociclib will bring them down and keep the omentum stable.  Hope you are doing ok, too!  It's a hell of a journey, isn't it? x

 

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

Hi TB 63, Do you have Lobular BC? I have just started Letrozole alone but don’t feel it has started working after a month. My mets are to various membranes incl omentum. Have tried Paclitaxel, Eribulin and Cape but haven’t heard of ribococlib
Hope it’s working for you
Jane x
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi TB63,
Thanks for your update, always interesting to read how others are getting on. I am going into my 14th month on Cape and it has managed to keep things stable for me. TMs have been rising but latest result yesterday was same as a month ago so onc has classed me as stable for the moment.
I hope you don't mind me asking, but how did you get on Ribociclib? My trust only funds it for first line treatment. I have heard really good things about it so hope SEs ease up a little for you. Speaking of which, I am suffering a little with sore feet and peeling finger tips so spend a lot of time wearing thick socks and trainers. However, as long as treatment works, it is well worth it..
Lynnq, hope Cape working well for you. Sounds like you are well prepared with all your treatments for SEs.
Hope everyone doing well on this thread, seems to have gone quiet lately which I am sure is a good sign.
Have a good week all 😊

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

History: 1997 first BC - Lumpectomy/Radiation, 2002 second BC mastectomies.  All clear until 2016 - metastases in lung/bones - given Xeloda for 6 months (apart from a bit of Diarrohea wouldn't have known I was on anything).  Brought markers right down.  Then 18 good months before new metastases showed up in the omentum.  Xeloda commenced again but hasn't brought the markers down.  Now introduced Letrozole with Ribociclib (side effects of Ribo not great and feeling knocked around).  Xeloda was really good - hardly any side effects.  Was taking 1500 mg twice per day - no hand/feet issues - think this depends on the dosage.

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

Hello again everyone and thank you for your tips.  I started Cape on Saturday 2000mg x twice daily.  I thought that was a lot Onc said that he would start on a low dose but I am 5’ 9” tall so I expect that is why.

Very  early days so no SEs but I am stocked up with udderly cream, non alcohol mouthwash and bought new oven gloves.

 

How are you Biker?  Hope that the wheeze is not too bad now.  You will have finished your first cycle now I think, I started a couple of weeks behind you.

 

Thanks for the tips on spacing the tablets Nicky, I do not like to eat dinner late because I have quite bad reflux, but I sometimes have late breakfast - not being a good sleeper if I lay awake I often lie in until 9.00ish.  I am having a snack - biscuit or yogurt or crisps at about 7.00pm and taking my evening pills then.  Seems that my days revolve around taking meds af the moment but I am sure it will all settle down.

 

good luck with your trial Janie, 

 

xx

 

 

 

 

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Re: Caceptibine

Hi lynq  thank you your kind reply. I have developed a bit of a,dry cough and an annoying wheeze. Macmillan nurse at my local centre it's probably from the mets. So hoping this subsides when on cape a bit further on. Hoping cape agrees with you. Best wishes xx

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

Hi Lynn,
I was on cape for 4 months earlier this year, found the SEs very manageable, no nausea at all, occasional mild diarrhoea so I made sure I always had some imodium handy, but rarely needed it. I did have hand and foot but nowhere near as severe as when I was on docetaxel previously. Start with the Udderly cream that has 10% urea, and use it frequently and lots of it! I kept a tube by the kitchen sink (but wear gloves as much as possible, preferably lined ones to protect against hot water, and oven gloves not just for the oven but even for stirring saucepans on the hob). Another tube in the bathroom and a little one in my handbag!

I did get some fatigue but I also managed trips to Spain and Greece!