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Xeloda / Capecitabine - Your Top Tips, please?

nicky08
Community Champion

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

Hi Barton, sorry to hear it was a dvt but really glad it was picked up before it caused any serious problems. I had a TIA last year caused by a heart problem (that in turn was caused by FEC chemo, long long story!) and was on these heparin injections for quite a while. I was wise to the fact that you can't have warfarin particularly with chemo but many cardiologists aren't aware of this so I'm glad your oncologist was on the ball. The injections are fine but you will need a letter from your doctor if you are taking them on a plane during the next 12 weeks, but if you are like me and grounded due to treatments, maybe this won't be a problem. The other thing is that there are a few newer types of anti coagulants being prescribed now by cardiologists in tablet form that don't interfere with chemo and don't need any of the blood tests that warfarin does. I switched to one of these, on the advice of my cardio-oncologist, some months back and haven't had any problems. If you wanted to ask your onc or cardiologist about them they are certainly easier to take each day. However if it's a short term solution having the injections they may just keep you on those.
Nicky x

2catlady
Member

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

Oh,barton ,huge hugs,glad you are getting sorted and so brave with giving own injections,yikes!
Kaye,oh no to shutting up caravan but yippee to winter sunshine! That's a fab thing to look forward to.
Back just as bad as long as I potter then only sit for a little while I can cope,grrrr to back.
Huge hugs cap ladies,take care,Helen xxxxxx
bertie1
Member

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

Hi Barton sorry to hear that it was a DVT after all,at least they picked it up and they have started treating it.Its good that you don't mind doing them yourself I had to do six months of blood thinning injection when I finished my Fec three years ago,I had a clot in my arm caused by the picc line I had to have the chemo .Yes it is sad to shut up the caravan you know winter is coming then but on the plus side booked a holiday to Tenerife just after Xmas.
Love
Kaye xx
Barton
Member

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

Kaye, thanks for the sympathy and glad to hear your DVT threat wasn't realised. Sorry to hear you had to shut down the caravan - it really is the end of the summer when you have to do that. There's always next year to look forward to. Best wishes, Barton.x

Barton
Member

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

Kaye and Helen, thanks for good wishes. After another 2 hours of my life that I will never get back, I have been ultrasounded and found to have a DVT. It's just below my right knee, which is good because the higher it is up the leg, the more dangerous it is.  I was given another blood thinning injection and a pack of 5 to take away with me (I'm OK about doing it myself - I did all the white blood cell ones after each of my original chemos). I will have to have them each day for 12 weeks! I need to get a prescription for the rest from my own GP before the 5 I have been given run out on Saturday. I can't have Warfarin tablets because apparently it doesn't play well with other medications, especially chemo. Anyway, that's enough of my adventures, how is everyone else? Helen, hope your back is feeling a lot better, and Bev, I hope you had a satisfactory outcome from your hospital visit today - keep us updated, won't you? Love and hugs for everyone in the Cap.gang. Barton.x

 

bertie1
Member

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

Hi Barton sorry to hear about your pain in your calf ,hope they can sort it out for you today and hopefully it's not a dvt.I had a raised clotting level a few months ago but apparently that can be normal if you have cancer,I had pain in my lung at the time but it turned out to be an infection.
Bev hope they manage to sort out the breathlessness for you today.
good morning to the rest of the Cap gang hope you're all doing ok and good luck to anyone who is on treatment or having scans or results this week.
I have a busy week as we shut down the caravan for the winter so lots of washing to do,will miss my weekends .
Take care all
Love
Kaye xx
2catlady
Member

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

Omg! Barton ,glad you got sorted and have follow up.
Huge hugs,Helen xxxx
Barton
Member

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

Hello, Helen, sorry to hear you are having bad back pain. Hope you will be feeling better soon.

I have spent 3 hours up at the hospital this morning/afternoon. I have had a bad pain in my right calf since last Tuesday, and yesterday afternoon and last night it was really awful, so I rang weekend number for chemo.unit this morning and they told me to come in. I suspected DVT, but they didn't seem to think it was.  I had a blood test, and then a blood thinning injection. And I have to go back tomorrow morning for an ultrasound scan at the walk-in-centre. Had a phone call from the out of hours Drs to say that the blood test showed a raised clotting level, and was checking that I would be followed up tomorrow. Apparently it's OK to take paracetomol for the pain, but it's not so bad now. Hope everyone else in the Cap.gang is OK. Wishing everyone few se's and good luck. Barton.x

 

2catlady
Member

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

Hi,thanks Kaye,I was hoping it was the cap or D and not the progression ,oh well.
OMG,to hand and feet,mine haven't yet but I've had the break ! They are verty wrinkled on ends like I've had them in water for a long time and slightly red but not cracks or peeling yet.
I hope yours settle down,huge hugs,Helen xxxxxxxx
bertie1
Member

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

Hi Helen I had my flu jab after 2nd cycle on my week off.I don't get any back pain with Cap or with the denosumab but everyone is different on this medication.The worst side effect for me had been sore hands and feet and now they started to crack and peel dispute creaming constantly.
Love
Kayexx
2catlady
Member

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

Hi,cap gang,has anyone started to experience worse back pain while on cap. I feel like I'm 90 in the mornings so stiff and pain 100% worse. It's since I started cap and denusumab so just wondering if it's one of those to blame. Once I get up and going it doesn't seem as bad but I certainly can't lie in bed or sit for long as I stiffen up and it becomes difficult to move.
Hugs,Helen xxx
2catlady
Member

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

Hi, pam and smartie,that's why I thought I'd ask as hubby who is on vulnerable list as has acute asthma got his letter about a month ago! I'll ring surgery .
Thanks ladies huge hugs,Helen xxxxx
pam01
Member

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

Hi Helen. It is a good idea to have flu jab(infact you should be on your surgery's "vulnerable" list and automatically recalled....also pneumovax if you havent had it recently)...........the "dead " jab stimulates a response in your white blood cells so that they respond quickly if they ever come into contact with flu viruses later on......because of this its best to have it towards the end of your week off when your white cells are at their most spritely!...so that they produce a good immune response..... .in practise I dont think it makes as much difference with capecitabine as with other chemos because less people have reduced white cells when on it. (for example I stopped cape on the tues..had jab on the friday and restarted cape following weds)xx

Smartie
Member

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

Hi Helen, you will be offered the flu jab if you are on chemo and have a compromised immune system. I had mine during my week off Cape, without any problems. I have had the jab for the last 3 years without any reaction.
Thanks to everyone for their best wishes, hopefully it gives comfort to those just starting Cape that it can give good results for a long period.
Have a good weekend all, Smartie x

2catlady
Member

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

Hi,thanks jo,I'll do that
Hugs ,Helen xxx
Jo_BCC
Member

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

Hi Helen

 

If you would like to give the helpline a call they will explain to you all about the flu jab.  Lines are open this morning at 10am until 2pm.  Calls are free 0808 800 6000

 

Take care,

Jo, Moderator

2catlady
Member

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

Hi,cap gang,not sure this question has been asked before. But are we allowed or offered flu jabs and when is best time to get it,while taking cap or on week off?
I forgot to ask today at hospital .
Hugs ,Helen xxxx
Katherine2701
Member

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

Biggest congrats to you Smartie. Long may the good results continue, with as few SE's as possible!
Katherine2701
Member

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

Bless you, Barton. You know how it feels!
Katherine2701
Member

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

Thank you lovely ladies all so much. I really hope it has given hope to you all. My Onc was so upbeat having told me in August I may be too ill for the chemo and that I only had weeks to go! I'm sorry I can't help you Hilsy as I don't know about Tykerb but please remain positive (believe me, I know how hard that is!). If I can turn my prognosis round through chemo I'm sure that it can happen for you too. I'm keeping my fingers and everything crossed for you and hope you are soon posting a similarly positive message on here, and the same for all of you have been so kind. I couldn't get through these dark days without you all!
Barton
Member

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

Hello, Smartie (love your name, by the way!), so glad to hear of your good news, too. It gives all of us hope. Best wishes, Barton.x

Barton
Member

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

Hello, Hilsy. I'm afraid I can't help re.the other 2 treatments you are on. I just wanted to say how sorry I am to read of your recurrent secondary brain mets. I hope that the combination you are now on has a good effect, but without any nasty side-effects. I'm thinking of you. Barton.x

Barton
Member

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

Hello, Katherine, what marvellous news! I am so happy for you! I know what you mean about the Oncs.not understanding se's - I sometimes think they ought to have a few doses, so that they do! A bit extreme, I know. Sorry if that sounds harsh! Anyway, Katherine, as I said, I'm very happy for you.  May the rest of the Cap.gang have the same results. Barton.x

 

Stillhere
Member

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

Lots of good news today, well done ladies!!! It gives us all a lift to read about positive results, long may Cape be with us!!
2catlady
Member

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

Hi,smartie,yippee,to being stable xxx. Yes,get a holiday in it will do you the world of good xxxxxxx huge hugs ,Helen xxxx
Smartie
Member

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

Great news Katherine! I had latest CT scan results yesterday and after 14 cycles of Cape everything is still stable (yippee!) having a short 6 week break to let my body recover a bit as I have not been feeling myself, low HB, diarrhoea and the usual dry hands and feet. Might fit in a quick holiday whilst I can! Sending best wishes to all Cape ladies and hope it continues to work for all of you.
Smartie x

nicky08
Community Champion

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

That is such fantastic news Katherine, I am soooooo pleased for you. I too remember your posts from a few months back and, at the time, was concerned you'd even get started on Capecitabine, let alone have such brilliant results, due to liver function results etc. This gives hope for so many ladies out there and I am sure you and your family must be over the moon. Long may it last 🙂
Hi to Hilsy, I don't have experience of lapatinib myself but I do know of a lady who it held, and reduced, her brain mets for quite some months before she was able to have surgery.
Nicky x

bertie1
Member

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

Hi Bev good luck with your scan on 4th November.I don't get scanned till after Xmas as only just finishing my 3rd cycle.
Kaye xx
Bevlaar
Member

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

Hi kaye...we must be at the sane stage in our treatment. Ive just started my 6th cycle of Cape this week and being scanned on 4th nov.
Hoping to see some improvement then!
Good luck with yours!
Bevlaar xxxxx
Hilsy
Member

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

Hi guys is anyone in lapatanib/tykerb as well as Cape? I was just taken off herceptin in favour of this as it crosses blood brain barrier and I have an out of control recurrent secobdary brain met. Really hoping the 2 start to shrink it as in really deteriorating this week but today is only day 1 of the tykerb.....any advice or anyone know at what point this new lapatanib would start kicking in? Ps I'm delighted to hear recent neea it's so great when ever I read people saying about shrinking etc. I think the word shrink is a new favourite word x
Gillg78
Member

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

Katherine, I just wanted to say that I have been following your liver posts and what an amazing turnaround to your prognosis posts in Aug. I had been given a rubbish prognosis from a rubbish Un positive onc a few weeks back and your successful new treatment plan has filled me with hope today. X
bertie1
Member

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

Wow that's excellent news Katherine long may it continue .Hope it works as well for everyone else on it .I am being scanned after my sixth cycle so hope I see a reduction .
Kaye xx
Bevlaar
Member

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

Fab fab fab fab news katherine!! What better news could you get? Long may it continue for you !
I hope that it'll work its magic on my lung mets too..and for the other ladies here.
Well done xxxx
2catlady
Member

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

Oh WOW!!! Katherine,that's fantastic .I'm soooo happy for you. You go girl.
Huge hugs,Helen xxxxxxx
Katherine2701
Member

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

Hi lovely ladies! Just to let you know my results today showed a 'significant reduction in all tumours including those in my lungs and liver'! Woo hoo! My oncologist was pleased and said if it stays like this then I can stay on Cape forever. Sometimes I don't think the Oncs understand the side effects however I am very, very pleased that there has been a reduction and so am feeling great today. Thank you all for all your support in the build up to getting my results. I couldn't have done it without you!
ginette65
Member

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

thanks helen and kaye

am 9 days into 1st cycle,not too bad,better than the taxotere i had 3yrs ago which nearly killed me! was in hospital for a week! have had tummy pains,headaches,nausea and fatigue,am hoping it does get better,but that would be too easy.daunting to think we have chemo for the rest of our lives!

angelina

bertie1
Member

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

Hi Angelina I think side effects are different for everyone.Im now on my third cycle and have been fine except for my feet and hands,I had to have an extra week off after my second cycle as they were really sore,they don't seem as bad on this cycle but my onc did reduce the dose and she was happy to do this as my markers had dropped from 194 to 39 after two cycles and she,ll see how I am after this cycle.I think the side effects can vary from cycle to cycle hope this helps.
Kaye xx
2catlady
Member

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

Hi,Angelina,everyone is different and every cycle can be different. Some people have an "easy" cycle then next one hard,then it may be okay again.Some people have minimal SE or non at all while some have bad SEs. I'm very nauseous with mine but I've only done two cycles,start third on Friday .
Hope you have minimal SEs and good luck.
Hugs,Helen xxxx
ginette65
Member

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

hi kaye

i have just started cap,do the side effects get worse each cycle or is it the same each time?

thanks

angelina

bertie1
Member

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

Hi to all the Cap gang hope you're all doing okay on your treatment.On my third cycle now and hands and feet are starting to crack and peel though they are not sore thankfully just creaming them constantly at the moment.
Love
Kayexx
SDP
Member

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

Hiya - herceptin doesn't cross the blood brain barrier but lapatinib with cape does so this is the one you need I think! Thats what I've been told I will have in future anyhow! xxx

Hilsy
Member

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

Hi lovelies! I'm confused! I was put on herceptin and capecitebine for my her2 positive brain lung and liver Mets. Today after 2 rounds of capecitebine and 3 lots of herceptin I was told they're replacing herceptin with lapatinib/tyverb. Anyone any idea why? No results or scans have been done for them to suddenly change. Is this drug better than herceptin? And anyone have experience of this drug and capecitebine shrinking tumours? Is this the drug thst needs private funding or something? Soz hope you're all ok xxx
2catlady
Member

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

Hi,Barton ,thank you xx start third cycle on Friday. Hope having three week gap haven't let the squatters party. Onc is giving me a scan on 4th cycle because of gap .
Helen xxx
Barton
Member

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

Hello Helen, glad to hear that. I hope you were pampered! You deserved a good holiday. Best wishes to you and the rest of the Cap.gang. Barton.x

2catlady
Member

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

Hi,Barton ,yes,thanks had a fantastic time. The best I've felt in a long time xxxxx
Stillhere
Member

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

Mrs Blue, I'm glad to hear that you are also on a week on/week off cycle. I take 1800x2 per day so 3600 and am 5'8" and just under 11stone...humph, well ok, just over right now! I am very lucky in having few side effects, the ones that most ladies have are milder. I do take anti-sickness tablets, metocloprimide at the same time as Cap ones as I was very sick on IV chemo.
I've been on this regime for 14 months with good results, just praying it carries on working. Good morning to all Cap ladies!!!
mrsblue
Member

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

Regarding dose... I'm on a lowish dose, still effective - 2200 mg daily, that's two large ones and one small x 2, also on a 4-weekly cycle, 1 week on 1 week off x 2 then back for more... hopefully, subject to blood tests etc.  (My main problem with those is that I'm anaemic but haemoglobin is still ok for chemo.)  Am 4 ft 10 ins and slighly overweight (hmm) good appetite! 

quality_street
Member

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

Hi all, am on cape for the second time around and have discovered very soothing aloe vera gel from Holland and Barrett (buy one get one half price at the moment) I use it on its own or mixed with e45 cream on my poor old feet and it is gentle and soothing-defo worth a try. xx

Barton
Member

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

Helen, glad to see you back. Did you have a good holiday? I hope so. Whilst we are sharing height and weight, I'm 5'2", and all I'll say about my weight is that I'm way too heavy! I'm at least a couple of stone heavier than Helen and Angelina. And I'm on 4000mg per day. So I'm wondering if dosage goes more on height than weight. Wishing good luck and few se's tobthe Cap.gang. Barton.x

2catlady
Member

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

Hi,cap gang,hope you are all doing okay. Katherine please don't be so hard on your self. Some people have an " easy" cycle then a harsh one regarding their SEs. Everyone is different and we all react differently .im really nauseous with mine but hands and feet are okay at moment. Next cycle may be different.
I'm on 4600mg 5'5 and 11 1/2 stone. I've just had three weeks off because of holiday and start third cycle on Friday.
Take care cap gang,hugs,Helen xxxxx