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Capecitabine, desperately need feedback on this drug

74 REPLIES 74
buster1
Member

Re: Capecitabine, desperately need feedback on this drug

Hi everyone, just an update as I am gobsmacked at the difference in me. The consultant has reduced my dose from 2500 twice a day to 2000 twice a day and the difference is amazing. I’m like a different person going from dragging myself around and all the side effects to feeling very nearly normal. I’m ecstatic just keep my fingers crossed that it’s as effective. Love to you all xx 

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Sarah and all who have concerns about Capecitabine. Thank you so much for all replies although my post was about a year ago, I started on 20th August 2021 and am still taking it. My dose is 1650mg morning and evening. 

I make sure I eat before taking it and am tolerating it quite well. Yes, I get diarrhoea from time to time, so take Loperamide after which does help. I also take Metoclopramide every morning for sickness, although haven't felt sick for a long time. I was told to continue taking the Metoclopramide anyway.

As for skin conditions, I just get rough flaky skin only on my left heel, so I use Udderly Smooth  skin cream with 20% urea and find this really good. I do suffer with bad stomach pain every morning in the early hours,  usually about 4 - 5am, don't know if it's the Cap or some other stomach condition,  I've asked many times but it seems no one knows, I just get told to up my morphine! However after waiting since March I've finally got an appointment with gastroenterology in December.

I'm so sorry to hear that some of you lovely ladies have suffered and are still suffering with terrible side effects, so obviously it isn't for everyone but wish you all the very best and hope it gets better for you. 

Sending hugs ❤

Shirley xxx

Lesley123
Member

Re: Capecitabine, desperately need feedback on this drug

Hi All. Just wanted to say I am about to start my 3rd round of Capecitabine no side effects only tiredness but can cope with that doing reallywell on it, can’t understand why some people have so many side effects feel so sorry for them, oncologist ringing me tomorrow to see how I am getting on with the tablets. Good Luck to you all.x

Astrid
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Debs, Thanks for your kind reply and i’m sorry to hear you’ve had a tough time in Cap too. I haven’t heard of Lanzopraxole, but it sounds like it’s helping you, but I do understand your worries about the scan results as I dread waiting for my results. After my Cap episode, they gave me a couple of months’ break by which time my scan had changed which was upsetting, but I’m now Paclitaxel - 6 cycles. 3 weeks on, 2 off - and so far it’s been fine. I’m eating well etc but am more tired than at the start. After discussion with the Dr, we’ve decided that I will have two more cycles, with a review after cycle 7 which I’ve just started yesterday. I’m due another scan in the next few weeks so keeping everything crossed! Take care of yourself and study in touch as and when. Best wishes x

SarahLousie105
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Timmycat

I was on Cape for over three years. It took a while to find the right dose as to start with a was on the highest dose. Over the first few months they reduced it and then change it from two weeks on two weeks off.

The main side effect was tiredness. I also lost my appetite but overall it is much less of a hassle that the IV that I am now on and the side effects were tolerable. After being on it for a year they gave me two cycles at time to take home so I only had to go to the hospital every 8 weeks.

If you do decide to go down this route and suffer side effects to start with make sure you ask you drs if they can reduce the dose.

I hope this helps you make your decision.

Hugs

Sarah 

 

buster1
Member

Re: Capecitabine, desperately need feedback on this drug

Thank you so much Astrid for your reply. I am so sorry that you suffered so badly. I have had some days like you on all fours, but not been poorly for the whole 2 weeks bless you. You sound so much worse than me. I definitely couldn’t cope like this for the whole 2 weeks every month I felt so Ill and couldn’t get off the loo. I couldn’t eat either so felt so weak. Even though it states in the literature that lansoprazole affects the absorption of cape, because my side effects are so much more tolerable when I took them both together, my consultant said it was ok to do so. I do worry though that it won’t be as affective but the scans will soon show that and I couldn’t carry on anyway without it. I really appreciate your reply and hope you’re doing well now. What are you on at present? Big hug Deb

Astrid
Member

Re: Capecitabine, desperately need feedback on this drug

Hi there, I’ve just read your post and would agree with everything you say. It’s so hard isn’t it. I’ve done a lengthy reply to someone else (which I now believe may be an d comment?) re my Capecitabine experience if you feel like reading it. Take care and keep plodding on 

Astrid
Member

Re: Capecitabine, desperately need feedback on this drug

Hi there, This is the first time I’ve been on the forum, but saw your message re Capecitabine(Cap) and wanted to reply. I first experienced Cap in 2007, following surgery and a course of another drug (Epirubucin I think). During the first cycle, I started to feel with awful stomach cramps, vomiting and diarrhoea which got so much worse that I was admitted to hospital in the middle of the night and spent a week in hospital feeling wretched - hadn’t experienced anything like it before, so was quite frightened. As I was taking part in a clinical trial, I was given further cycles of Cap, but at a reduced dose and they had to reduce the dose even more which stopped the vomiting etc, however, I suffered with the hand/foot side effect until I finished the course completely, which was very painful and I struggled to use my hands eg driving and it was very painful to walk. In 2018, I was diagnosed with secondary BC and after various courses of drugs which worked from 2018, my Consultant (the same one as before) recommended another course of Cap which horrified me tbh. However, following a blood test for a particular protein (a fairly new test I think), I was told that as the blood test showed the particular protein to be present (?or absent), I was given the green light to begin treatment. I was still unwilling to take it again, but in short, eventually allowed myself to be convinced by the experts that this time it would be easier and started the first cycle in Feb of this year. By the end of the first week, I started with the nausea, stomach cramps and then diarrhoea, which once again quickly became unbearable. At one point, the only slight relief I could find was to go down on all fours and breathe in and out very slowly. In short. I ended up in A&E feeling ghastly and spent the day in the A&E ward, with severe vomiting and diarrhoea, and was eventually admitted and was kept in for 2 weeks. This time, the severity of the symptoms seemed worse, I couldn’t even keep water down and the diarrhoea was unbelievable. I also had severe hand/foot syndrome again - the skin my hands resembled crispy duck! The Cap had caused so much toxicity that it had stripped my blood of everything pretty much, which was all replaced via IV means. I lost 5+ kilos, but after the first week, I started to eat small amounts to begin with and was eating well when I left hospital. Once home, I started to improve bit by bit, but arranged for a live-in carer to look help me for a few weeks until got back on my feet again. Once again I got myself through the dreadful Cap experience and felt proud of myself. At my next hosp app a few days after leaving hospital, my consultant was amazed to see me walk in (very slowly) as had assumed I’d be in a wheelchair!  Anyway, they had decided that I would never take Cap again as they believed that an enzyme in my blood reacted to it (an enzyme which there isn’t a blood test for it seems). I would have refused to take it even if they had wanted me to go back on it  

Please note that what I’ve said above is not intended to scare you (or anyone else) as plenty of others don’t have such a negative and nasty  experience of Cap, however, I felt it important to be honest. Please come back to me if you want to ask anything and I really wish you well for your Cap experience. Take care 😊

adoptedmanc
Community Champion

Re: Capecitabine, desperately need feedback on this drug

Hello @buster1 

I’m sorry nobody has replied to your original post. 
You might like to try re-posting in the “Ask the Nurses” section of the forum https://forum.breastcancernow.org/t5/Questions-about-anything-else/bd-p/anythingelse 

Alternatively you could call the number at the top to speak to one of the nurses 

AM xxx

buster1
Member

Re: Capecitabine, desperately need feedback on this drug

I’m replying to my own messages 🙊. I’m wondering if no one’s replied because everyone seems to tolerate Capecitabine. Or not and rather not say. I’ve been admitted with severe headaches last weekend post covid but consultant thinks it was just migraine. I honestly don’t, but do think now it could be related to covid. Last day today of first cape treatment and have really struggled. Was discharged on Monday on omeprazole and was ok then found out it stops absorption of the cape so had to stop that. Now I’m back to nausea and diarrhoea. Is this drug accumulative or have some if you got used to it eventually? I’m wondering if it gets better or if it doesn’t suit in the beginning it won’t be tolerated. I hope all that makes sense. Please answer as I’m scared x

buster1
Member

Re: Capecitabine, desperately need feedback on this drug

I know this post was last year but it’s info relating to me now. I’m only just on day 4 of first course of capecitabine. The reason I’m panicking this early on is I’m worried that I won’t tolerate it. We all seem to be travelling a very similar journey with the bone mets then spreading to liver etc. i tolerated the palbo quite well except the fatigue so was gutted when it wasn’t working. I’m now having awful griping churning belly. Nauseous and struggling to eat. I hoping so much that you tell me this will settle down when I get used to this new drug. Isn’t it scary the more the ca spreads and the more treatments you move through? People keep saying how brave and positive I am but little do they know this is starting to wain. Not that I was ever brave, but I was very positive and hopeful  and always felt I could beat this (or maybe I told myself that) now I’m getting scared. I’m also worried that if my family see me suffering it’ll worry them so much more. I think we all feel we burden them. Just a few replies will give me the strength to keep going as I’m wussing out at the mo. Love to everyone xx

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Louise, 

I see your tumour markers are quite good as well, so pleased for you. 

My BCN advised me not to take Loperamide during the two weeks I'm taking the Cape and to stop the Cape if diarrhoea got really bad, 4 times or more a day, although I'm not really sure why, I'll ask her to explain why next time I speak to her. Although now I'm ok in that department thank goodness. 

So sorry that you have the hand problem, are you using the cream with urea in? It sounds really awful, maybe gloves would help, perhaps some of the other ladies can help you more than I can who have experienced it themselves. 

I wish you all the best and hope you improve as time goes on. 

Definitely keep in touch 

Shirley xxx

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Timmycat

Thank you for your reply. I am impressed with you tumour markers 26.3 that is within the normal parameter range I believe :-). Mine were 86 from blood result on 20th or 21st Dec.....can't remember which day I had the test.

May I ask ask why you take Loperamide only on your week off could you not take during capecitabine cycle?

I have just completed my 4th cycle and now started my week off, so hoping hands improve as very frustrating I struggle to do anything :-(. Even trying to take a cap off a bottle of squash I struggle. Can you were gloves would that benefit.

Great to hear you had an enjoyable Xmas etc and I wish you well, keep in touch.

Louise xxx

 

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Louise, 

I also had an enjoyable Christmas thank you and I wish you a happy and healthy New Year.

It's interesting to hear that you too have stomach aches, this morning I spoke with my BCN and told her that last night I was again having stomach aches, although they never really stopped, this started at 2am and only eased when I'd had very loose stools twice in the morning.  I was worried that the cancer was spreading again and that the Capecitabine had stopped working, but when I was finally able to have my blood results from 21st December all seems well. I was worried because these symptoms happened when my first initial drugs stopped working. 

Tumour markers now down to 26.3, I'm not anaemic, white blood cells fine, platelets up to 236 and my liver is fine. She said loose stools are because of the Capecitabine, so I seem to be OK,  but if I visit the bathroom 4 times or more then stop the Capecitabine, I'm on day 13 today so hopefully I'll be able to complete this cycle 7. I can take the Loperamide in my week off.

So if anything like this happens to you then don't drive yourself mad with worry, hopefully like me it's just the drug. I hope you've got a really lovely BCN too.

Pleased you're feeling mostly well, and we are indeed here for each other, let me know how things continue for you. 

Sending hugs and love

Shirley xx

 

 

BoxerMum
Member

Re: Capecitabine, desperately need feedback on this drug

Louise

That’s great to hear that you’ve got back to some kind of normal and your appetite has settled down now.

I saw oncologist today & she’s not convinced that Cape is helping with the cancer - says I should be feeling better than I am & will check with scan what’s happening. Thinks there may be some neurological involvement that hasn’t shown on previous brain MRIs. My imbalance is still a problem but physio has given me some exercises to try & help with strength in my legs (depleted thanks to steroids) 

Happy New Year to you all - wishing you best of health with Cape

Alison x

Tracy De Boorder
Member

Re: Capecitabine, desperately need feedback on this drug

I know how you feel I'm taking the pills religiously every 2 week but don't feel great and they told me today the cancer is still active not sure what is next my cases goes to MDT on 11th to see what else can be done.

I'm in hospital right now which has made me realise how lucky I am really with all the other patients.

Happy New Year to you all, hope you're all pain free and comfortable and safe. Xx 

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Alison

My appetite has returned and I seem to be eating huge amounts, I had loss half a stone however weight now increasing. I'm normally around 10stone 8lbs but went down to 10 stone 1 lbs!!! Thank you for your thoughts. I am happy with how much I am eating as I am back to what I was eating before hand 🙂

Your body will adjust to the chemo tablet but takes time, I feel with time my body adjusts to the tablet and to be honest I am able to lead a near on normal life/routine, with a few ups and down, listen to you body and if you need to rest you must etc.

Keep in touch Lou xx

BoxerMum
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Louise

thanks for the explanation.

how have you been feeling since the transfusion? Has your appetite been sustained since? Are you happy with how much you are eating?

It sounds like you’re doing really well. This drug still worries me, that I’ll never feel normal again - I still feel so weak & can barely function normally. 😢

 

best wishes

Alison x

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Shirley

My Christmas was good/ok I hope yours was too 🙂

Yes definately worth taking this tablet no doubt! I sometimes have stomach aches during the night and once been to the bathroom this seems to ease. I had an episode of an upset stomach which lasted 2 days about 3 weeks ago but I took the anti sickness and other tablet they had kindly gave to me to ease an upset stomach and that seems to have done the trick. Other than that I too have been feeling ok sometimes my hands have worse days and sometimes ok, but this doesn't stop me doing anything, on occasions my partner has to open a bottle or tin.

Thank you for your kind thoughts re my tumour markers, the tablet works wonders so as long as stable or getting lower I am sure, let me know once you find out. We are here for one another through thick and thin.

Love and hugs

Louise xx

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Alison

Yes I am in the UK. When I say tumour markers they are also named CA15-3, your Oncology I guess would be requesting these when you have a blood test, you just need to ask for the result. What CA15-3 forms I understand is a trend between scans - scans tell the story but CA15-3 gives guidance in between, if they go up and up then the treatment is not working if they are stable or going lower then treatment is working. Anyway that how I understand these markers.

Hope you had a nice Christmas and best wishes.

Lou xx

BoxerMum
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Shirley, and Louise!

so good to hear that you’re both doing well on Cape. I feel that my breathing has definitely improved (I have lymphatic involvement - lymphangitis carcinomatosa) am just still feeling generally yuk, awaiting blood results tmrw.

I’m curious, are you guys in the UK alike me? If so I’m wondering about tumour markers - I’ve never been told about these, they have never been mentioned. I’m wondering if it’s a health trust matter or whether I just need to ask for them.

I’d be interested to know.

best wishes

Alison x

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Louise, 

Hope you had an enjoyable Christmas and it's so good to hear that you're doing well with Capecitabine. 

Excellent news about your tumour markers, it's definitely worth taking this tablet . My last blood results which were taken on 21st December were fine,  my BCN was away though so I don't have any exact numbers which is slightly annoying, so I'll have to wait. 

However I've been feeling quite well so assume the tumour markers are down,  I just still get stomach aches in the early hours, but stops after a visit to the toilet! 😄 I have wondered if it's just me or the fact that I had the spread to my liver, initially from my bones.

Let's hope we all do well on this drug and it's really lovely to know you're doing well Louise, long may it last. 

Best wishes and huge hugs to you too

Shirley xx

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

HI Timmycat

How are you, still coping with Capecitabine I hope? And I wish it to be working wonders for you, I read that you tumour markers were down from 593 - 183 that is fantastic. Its worth taking this tablet, mine are down from 129 (highest) to 86 last week. 

I pray that this continues for me and everyone else dealing with Capecitabine.

Best wishes and huge hugs

Louise xx

BoxerMum
Member

Re: Capecitabine, desperately need feedback on this drug

Louise 

Thanks so much for your reply - it’s reassuring to know that your transfusion helped. The appetite is that thing that is worrying me most.

I have next appt with oncologist New Year’s Eve so will see what they recommend - will keep you up to date.

I am finding the lack of balance very debilitating and so walking is difficult. I just want to feel some way normal again ☹️

BoxerMum x

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

Hi BoxerMum

Nice to hear from you, and it seems we are in a similar place both being on cycle 3 of Cape.

I also lost my appetite, eating  near on nothing. I am also anaemic I had a blood transfusion yesterday they thought this would help, my goodness it has helped, I ate a bowel of pasta last night and had a crumpet for breakfast so yes have the transfusion it has helped me, fingers crossed it continues to help.

Merry Christmas and hope you feel better.

Louise x

BoxerMum
Member

Re: Capecitabine, desperately need feedback on this drug

So glad to see this thread. I’m on Cape cycle 3 and am having terrible balance issues to the point where I feel I can barely function.

Eating has become a real stress and concern, like you say the taste of the supplements is beyond me. How can they make Quorn taste like real meat and yet they can’t manage to make a palatable protein supplement for the malnourished.

I am now anaemic and have been told a transfusion may be necessary - has anyone had one & did it help how you felt? 
man looking for hope that I won’t feel this bad indefinitely 

Boxer Mum

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Jaybro

How are things going for you? You have great results from Cape, wishing that continues for a long time.

I am on cycle 3 1st cycle no side effects 2nd cycle started to have problems with hands, then had my week off which helped the hands, having starting 3rd cycle and am on 2nd week my hands, bowels, blood shot eyes and tiredness really kick in, but I can cope with all of these side effects. I have a CT scan on Monday and will also have blood taken to measure bloods and CA 15-3 (Tumour markers), last CA15-3 result was down from 129 to 110 then on week off rose to 122 however still lower than 129. I am praying this treatment works, even my partner say a little pray every night for me. I am lucky to have been born in the UK, had a great job, children and family, house and I think of women/Children on the streets in India, Afghanistan, people having to try to cross the channel in a small boat risking their lives I am lucky!! 

For everyone else on Cape I wish you well 🙂

Louise xx

Jaybro
Member

Re: Capecitabine, desperately need feedback on this drug

Hi fellow capers

Just finished cycle 10, So far so good. Blood markers 128 down to 19 or 20 the last 4 blood tests; tumour markers are new to me but they are down from 24 to 6 - room for improvement. MRI shows brain is fine and tumour has reduced a little bit (little tumour, smaller reductions I’m told). Side effects are obsession with bowel behaviour and fatigue at any time. I’ve done a bit of driving but have to go by how I feel so I’m not yet back at the gym/pool. I’m longing for a swim but doubt I could manage a length as I get so breathless. I managed to walk to the end of the cul de sac, all of 5 houses, and had to sit on someone’s wall for a bit!! Still, I can build that up. PPE still grade 1 which is great. Now I’ve started hot flushes - can anyone guide me on that please? I had such a quick and easy menopause, I’m a bit resentful I should get them now!!

I’m still dealing with it well emotionally but I can’t rid myself of the dread of each consultation for fear I’m told it’s not working any more. I reason that they would ring if blood results were unusual but logic doesn’t help.

Hope it’s also going well for everyone else. Louise, I’m sure lack of side effects just means you are very fortunate. I’ll keep my fingers crossed for you.

Jan x

 

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

Thank you Timmycat

I am so pleased the Capecitabine is working wonders for you it is remarkable and I wish/pray it does this for me. My next blood test is just under two weeks away where they measure the CA15-3 marker. I have what I believe to be no side effects maybe a little tired, this worries me as I convince myself the capecitabine is not working as I read many stories on here with people suffering. I need some positive news from blood tests and scans, like everyone on here does.

People ask me what I would like for a Christmas present which is lovely, but all I want is for the Capecitabine to start working.

Thank you so much for the positive vibes which are desperately required. I am sending you positive thoughts for the Capecitabine to work for many many more years.

Love Louise x

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Louise, 

So very sorry to hear that your tumour markers have increased to 129, mine were 183 down from 593 after a restart of cycle 1, but....and this is a big but...I had to stop the Capecitabine for 17 days because like you my results of first attempt of Capecitabine were bad.

My platelets were too low only 52, I was very anaemic so had another blood test on 9th August. 

So I'm counting my restart of Capecitabine on 20th August as cycle 1, hope this makes sense. 

Anemea was 104, tumour markers 183, platelets up to 173. I'm on a dose of 1650mg twice a day. 

So cycle 2 was started on 10th September, cycle 3 on 1st October, cycle 4 on 22nd October. and now on cycle 5 ,started that on 12 November. 

So now I'm feeling really well, side effects are minimal, so please don't get too worried, hopefully like me you may need more time for your body to adapt. 

Pleased pour your heart out anytime 💕 I know it's so distressing and draining as you say, but we're all here only too pleased to help and give hope to everyone, because when you're at rock bottom you so desperately need someone to listen. 

I hope you get on now with the Capecitabine, and will feel better and positive as time goes on, always thinking of you,  and please let us know how it goes. 

Sending loads more best wishes and positive vibes.

Shirley xx

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Timmycat

I am so pleased to hear your good news regarding your tumour markers it gives me some hope. I am tolerating Capetabine ok just started second cycle yesterday, my only noticeable side effect so far is being tired but I put that down to that I am working full-time, so really no side effects which worries me. I also had a blood test before starting second cycle and unfortunately tumour markers have risen from 107 to 129 (this has risen nearly 20% in the space of 3 weeks), I was so upset to hear this and asked the nurse if this meant the chemo tablets weren't working, she said it is too early to worry but that they would keep an eye on this, well that doesn't really help me as I am convinced nothing is working. I've had no good news since diagnosis, its draining.

Sorry to pour me heart out to you but may I ask how your tumour markers were after 1st cycle?

Thank you for thinking of me and asking how I am 🙂

Best wishes

Louise x

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Louise, 

Just wondering how you're getting on with Capecitabine, hopefully it's working well, and you've not had any bad side effects. 

I'm starting cycle 5 tomorrow and have got some positive news from my bloods and scan which I had on Saturday. 

Tumour markers now 44, from 65, platelets 224 up now from 195, bone cancer is stable and I'm no longer anaemic. Also my liver tumour has shrunk from 15mm to 8mm now. So all in all it's fantastic news. 

Really hope you and the other lovely ladies can stay on this drug, and that you all report good news too, thinking of you all and sending my very best wishes.

Shirley xx

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

Many thanks Tracy

Very glad to hear you are doing well with this treatment after 4 cycles and appreciate the feedback. Good luck and fingers crossed for your next scan.

Lou x

Tracy De Boorder
Member

Re: Capecitabine, desperately need feedback on this drug

Hi there,

I'm now on my 4th cycle of Capecitabine and really I've had no side effects.  My feet do hurt sometimes like burning, tingly feeling but I religiously cream them every day and so far I have no hand and foot syndrome.  I'm doing OK on it, it's taking a while to settle all my symptoms it seems like a build up effect with it. I have my next CT scan in a few weeks so that will show how well things are settling down.

Good luck with your treatment and I hope it stays the same with you regarding now symptoms, stay well and positive. Xxx

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Tracy

I was reading your message and was interested to hear how you are getting along with Capecitabine (I started last Thursday). You mentioned your feet tingling and I wondered if this became the hand and foot syndrome? I am sitting here waiting for the side effects to kick in but to be honest nothing really yet. Is it too early? 

Best wishes

Louise x

 

 

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Shirley

Thank you for such a positive story,  my platelets yesterday were 173 same as you September result. I am also so pleased that you had such a huge drop in tumour markers from 593 - 183! To be honest I just want to get started on this treatment and pray and wish for some luck with results. 

Thank you for your wishes and I will let you know how i go.

Louise xx

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Louise,

Sorry that your first treatment didn't work, it's so frustrating isn't it. I first started Capecitabine on 20th July, so when I had my bloods taken my platelets were 52, so really low.

However I restarted on 20th August and have now had three cycles, with platelets 173 in September whereas before they were 78 and tumour markers down to 183 from 593, so Capecitabine is working well.

On September 28th platelets were 199, and tumour markers 105, so everything is going the right way.

As for my results of this Tuesday I haven't got the numbers yet, but all is well with my blood results and start my 4th cycle tomorrow.

To answer your questions, no I didn't have a blood transfusion so your nurse is probably right, a side effect of Cape, as for other side effects I've not experienced any problems with my hands and feet and am feeling really well. I was off Cape for 17 days.

I wish you all the best with this new chemo, let us know how it goes for you.

Shirley 

Loulou1007
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Timmycat

I have been reading this thread as due to start Capecitabine this evening once I have collected the chemo tablets. I am scared but like a few others on this thread in a way looking forward to getting started on this treatment as first treatment did not work (Fulvestrant and Palbo). You mentioned about your platelets being low and I have been informed by nurse this is a possible side effect, could I ask if they gave you a blood platelets transfusion and if you are now back on the Capecitabine, if so how long were you off of the tablet? 

Many thanks

Louise  

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Irene,

Firstly, I'm sorry to hear that Capecitabine has stopped working for you, I was really upset when Ribociclib stopped working for me after 18 months. But really pleased that you had over 2yrs with good results.

I've restarted this morning on Capecitabine and you've given me hope and encouragement, I'm prepared for the side effects and it's good to be back on chemo knowing that my body now has something to fight back with, I have been worried that the liver cancer was spreading, not so worried about the bone mets as Zometer lasts in your system.

Good luck with your biopsy results and your new chemo, and many thanks for your reply, so reassuring.

Shirley 

Tracy De Boorder
Member

Re: Capecitabine, desperately need feedback on this drug

Thank you so much for your reply. I started Capecitabine 2 days ago and I have to say I'm beginning to feel a bit better already so life is definitely better on medication. My feet have started tingling so I'm assuming the hand and foot syndrome is on its way but I'm armed with cream recommended by everyone. 

I really hope they find something new as quick as possible,  I was 5 weeks without medication a begun to feel quite unwell. New things are being found all the time so just keep those positive thoughts going. 

Sending you a hug. Xx

imac55
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Timmycat,

I've been on Capecitabine for over 2 yrs. It's kept me stable in that the tumours didn't grow, for over 2 yrs and cancer markers hardly changed.

Side selects were OK, much easier than fec for me anyway. I've kept my hair and learnt to live with the aches, as cancer treatment is all about how you tolerate it versus the potential benefits. 

I was told it wouldn't work forever and sadly, it has stopped working. I'm now waiting for biopsy results to determine next move.

If the choice is yours to take, I'd say give Capecitabine a go. On balance the side affects are worth it. 

Good luck for the future.

Irene

 

 

Tracy De Boorder
Member

Re: Capecitabine, desperately need feedback on this drug

Thank you, I've had balance problems for some time and tend to struggle with concentration for driving so avoid driving as much as possible. With fatigue I'm lucky I'm not working so can take each day as it comes. 

It's so nice to finally hear of other people's experiences it makes the side effects more manageable to know they are due to the drug and not the cancer. Xx

Mermaid007
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Jaybro,

I too have the balance problem and the fatigue! I’m on cycle 3 and so far have no problems with hands and feet but some days my balance is so off! I have aching behind the eyes too. My nurse says that everybody metabolises the drug differently hence some have different symptoms. I’m on 3000 a day after 2 dose reductions. On the higher dose I couldn’t even trust myself to drive because of the balance/ visual disturbance. 

Well here’s hoping it works then at least the side effects are worth it.

xxx

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Jan,

So you're up to cycle 5, really good to hear that your blood markers have dropped. I have fatigue all the time and I'm still waiting to restart Capecitabine. I haven't heard of lack of balance, so hope that passes for you. 

I've now got to have my third blood test (this Tuesday 17th) platelets still too low! I'm definitely going on the hunt for blood 🤣 yes, vampire life here I come!

Hopefully you Jan, Tracy De Boorder, lovemama and all the other ladies in our position will have success with this drug, sending my best wishes and hugs 🤗

Shirley xx

WMJ
Member

Re: Capecitabine, desperately need feedback on this drug

Good news Jan, although not about the SEs. I have just finished cycle 3 and my biggest issue is fatigue, I don’t want to sleep all the time but I don’t have the energy to do the things I used to do. I also have a bit of dry skin on toes and my big toe is quite red and sore. All manageable and hopefully worth it.  All we can do is hope for the best with these treatments as they react differently on us all. Take one day at a time, that helps me so much. My liver has been misbehaving for the last 6 months, hoping my recent scan shows the Capecilabine has done what it should do & shrunk the bu99ers! 👹

Take care & stay safe xx 

Jaybro
Member

Re: Capecitabine, desperately need feedback on this drug

Hi

Just to update you on the dreaded capecitabine. Cycle5 has not been so bad apart from the fatigue and lack of balance so obviously I’m getting used to it BUT in the first 4 cycles, my blood markers have dropped from 128 to 86 to 27. I am absolutely delighted although I know things might change next month, next year…I’ll take those readings and carry on downing the tablets and hope.

I think I’m just unlucky with side effects. I hope you are able to restart the drug once your blood platelets improve. Maybe it’s you who should turn vampire??

Jan xx

 

 

Tracy De Boorder
Member

Re: Capecitabine, desperately need feedback on this drug

Thank you ladies just spent last half an hour reading this thread.  I'm due to start Capecitabine next week having been on palbociclib and anastrazole for the last 2 years. It stopped working about 5 weeks ago and I've been without anything for a while, secondaries in my mediastinum and lungs are very active and I've been feeling pretty pants really but you've all given me a fresh outlook that it could all settle down again with Capecitabine. I've got some cream in in case of the sore feet but if it's the right thing to say I'm looking forward to getting started and maybe life can get started again. 

Thank you all and sending good karma and big hugs

lovemama
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Timmycat, I understand your feeling.

My triple positive breast cancer is at stage 4 with suspicious cancer found in liver, lung and biopsy confirmed met in sternum. After 8 cycles of Taxol, Herceptin and Purjeta, in at least 6 of my 3 monthly CT scan, my onco. told me there is NOTHING in liver, lung and my sternum is healing (no activity on PET scan). I thought I might be the very lucky one who magically achieved NED.

Then all of a sudden I had a severe reaction in my 7th and 8th CT scan (hives all over body, low blod pressure 30/60, tongue sting)  It is ok. No more CT scan with contrast for me forever. But on the 8th CT scan result they found 3 masses at the very top surface (in the skin ??) near my sternum and one close to my heart though still nothing in liver, lung and all the organs. I will soon start my 2nd line anit-HER2 treatment.

Cancer is suck !!!

lovemama
Member

Re: Capecitabine, desperately need feedback on this drug

Hi Timmycat,

I wish you can resume and continue on CAPE as long as you want.

Pls refer to page 2.

http://www.bccancer.bc.ca/chemotherapy-protocols-site/Documents/Breast/BRAVCAP_Protocol.pdf

Copied and pasted from below link

"Eat a balanced diet that includes foods high in iron. These foods include green leafy vegetables, liver and cooked red meats."

Leafy green vege. like spinach may not help but still good to have it as part of a balanced diet. 

https://www.cancer.ca/en/cancer-information/diagnosis-and-treatment/managing-side-effects/anemia/?re...

Timmycat
Member

Re: Capecitabine, desperately need feedback on this drug

Hi lovemama,

Thank you for this information and the link to a website. Also for all help with diet.

Unfortunately I'd just finished my first cycle and when the results of blood samples came back the news was not what I'd expected.  My platelets are too low and I'm anaemic so I'm to have blood samples taken again this Thursday, and had to halt the Capecitabine. 

Just when I thought I was getting somewhere!

Timmycat