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Has anyone had success with xeloda

pinkylou
Member

Re: Has anyone had success with xeloda

Hi I was on tamoxifen for nearly 4 years before I had a reoccurrence, I was told by my onc to come off it once I started taxol. I am now on xeloda , not really sure whether you should be on both or notindividually find that my onc tells me to do do something and then I do my research and find out why, not sure how relevant it is but I understand cancer that thrives on hormones eg taking a drug liketamoxifen will stop it fast moving as it is a hormome stopper , do if you have a chemo which is killing fast moving cells you don't want to mix the two as the hormone plus cells will not be moving fast as you ate taking a hormone blocker, do in effect the chemo won't be as effective, but I don't know how true that is, I have just had an injection in my stomach to close my ovaries down but I think that is more for heavy periods , let me know how you get on.

broomsticklady
Member

Re: Has anyone had success with xeloda

Interesting reading these Xeloda threads. I'm about to start, once I've got my pain rads out of the way - please appointment, come thru - I need you!! - but have been I can continue tamoxifen 'if I want to'. It seems most ladies have come off hormones prior to Xeloda? My onc says it not working any more, but the bone scan was stable - her concern is red blood cell count coming down which is bone marrow not doing its job therefore Xeloda? Taking tamoxifen doesn't really bother me - few flushes but not much else - I'm inclined to carry on despite her diffidence - the mroe the merrier as far as I'm concerned!!
Nina

Janice
Member

Re: Has anyone had success with xeloda

Almost as long as me Scottislass I was first diagnosed in 1985 aged 38 but had no problems for the following 20 years.

Jan

scottishlass
Member

Re: Has anyone had success with xeloda

The end of my post has jumed up so not sure how that happened but think it will be ok to read. Do not know how that happened.

scottishlass
Member

Re: Has anyone had success with xeloda

I think the secret is getting the dose right for YOU. I started with a high dose and I had awful feet and not so bad hands. I felt I was walking on broken glass after about 4 cycles. But it reduced my tumour markers by half after the very first cycle which made me want to continue. Some peope do not get sore hands and feet at all. Some peope are more sensitive to the drug.
The answer to your question about stopping or remaining on it all the time is.....both can happen. Many years ago I had the first 6 ot 7 cycles than had a break of 18 months or so. Then my tumour markers had begun to creep up again and also I wasn't feeling too good. So then I was back on Xeloda again but started with the reduced dose I had finished on the last lot. I remained on this for about 8 months and again it reduced the markers by half after the first dose, then continued to work. The feet were much better this time but had to keep slathering on the cream. Udderly Smooth Cream containing Urea (some don't) worked best for me. Then I stopped it again to give my body a break and this time the break without Xeloda was fot about 2 and a half years.
By the time I had stated the chemo fr the 3rd time my markers has soared to 3000 ( there are different markers that people have. Mine are CEA and Ca125). These markers should not be the complete pointer towards starting again and my Consultant doesn't like to look at them too much as they can be raised for all sorts of reasons. But when having chemo they are very useful to see the "trend" and to see if the treatment is doing its job. Out of chemo she prefers to take in how I am feelng as I am a good judge myself of where I am most of the time. My husband also can see the signs, often beore I do!
This third lot of chemo I completed 8 cycles and was scedualled to have another 4 cycles at least. But I unexpectedly needed to have a complete hip replacement which was carried out 8 days ago. Even this op had to be postpobed for a week as I only finished the pills on the Tuedsay and the surgeon was ready to carry out the op that Friday but my Oncologist said NO as my bloods had not had time to recover. So op was delayed for a week. I needed 2 units of blood at the beginning of this week when in hospital as HB had dropped to 7 but blood transfusion raised it to 10.1. I got home on Wednesday, quite early but I knew I would do better at home and besides I had married a nurse so he was able to help me. In fact better than some of the hosp nurses at times! And i could swear at him without being rude!
When I first had Xeloda I did not know anyone who had been on it. I met Dawn through this site and we were abe to compare notes as I did not know anyone with bone mets. When you are first diagnosed with BC there is lots of info but at that time there was no BCC help avaiable to me.
I did ALL the wrong things when I first started Xeloda. I do not know what I was told was 100% accurate so do not rely on my experience alone. But this is waht I did "wrong". It was December and as my feet were so sore on the soles I bought those slippers like boots as the soles were comfy. This kept my feet warm. I read that you should keep the feet aired so I now wear crocs. I rubbed in all sorts of cream into my feet. But I massaged and massaged the cream in and I read that this bursts the cappilleries in the blood and that was making my feet worse. (Remember I am not sure if this is 100% accurate). I started puting on the cream, rubbing it gently but not massaging them, then letting it soak in, and when I put the cream on a bedtime I would put on light cotton socks to allow the cream to absorb overnight and it also helped to keep the bed linen clean. So cool feet, lots of cream, do not overwork cream and Udderly Smooth Cream with UREA from internet worked best for me and felt lovely too. Other creams if you run out are fine. Nivea in a tub (which is thicker) was good but any cream is better than none at all. Your GP can give you creams for free but not the Udderly one.
If I have missed anything please ask away. Love to all and hope this helps someone who is having treatment or about to start. I have not been sick at all with Xeloda. Love to all Val
But I found this chemo much easer to tolerate once we got the right dosage for ME. Everyone is different. My appetite is affected but I only good "good" food and by that I mean home made soups, lovely fruits, tasty cheese. But my tastebuds were affected too so things now seem more salty than before and bacon is the worst. I have just had my second breakfast and my OH made sweetcorn fritters wheich are nutrious as well as tasty. I have lost weight without trying to do so but feel al the better for it. At my heaviest in the past 5 years I was 12 and a half stone and now I am 10 stone 2/4 or 6! But n diet at all involved and it has all happened very slowly. This is the icing on the cake for me as now I feel good in clothes again where before I felt frumpy and overweight. I had to donate loads of stuff to the charity shops BUT I had to buy new things that fitted! I had an op done last Sept and I had lost weight by then but I was 10st 12 in Sept 2011. Why I am telling you this is because it helped me having my complete hip replacement but also helped with how I felt about myself as sometimes we get "lost" when we are having cancer treatment.
I have had bone mets for 13 years now. ( For anyone new who doesn't know me) and BC since 1989 when i was just 39. There were no sites like this to bounce off, ask questions, compare notes or sceam!

pinkylou
Member

Re: Has anyone had success with xeloda

How many years have some people been on it ?

Steris
Member

Re: Has anyone had success with xeloda

Hi ladies,

I've been on Xeloda since December '11 and have had two reduction so far due to se effects mainly hands/feet. I'm just about to start 1500 twice a day. My oncoligst said that she has lots of younger ladies on this chemo and some of them have been on it for years. Which is great news she said I can be on this chemo as long as it last or until I can't cope with the se.


Hope the se are kind to you.
Love
Chris xcxx

LesleyLP
Member

Re: Has anyone had success with xeloda

Hi Gail, no I'm NHS treated - I think it was more of a medical issue than finanical - I think they worry about kidney damage etc, but as long as my bloods are looking good I think I should be allowed to stay on it. Marilyn, I have already quoted your long-term status on these tablets and they were gobsmacked, haha!

gail5
Member

Re: Has anyone had success with xeloda

Hi Ann

I posted an update from my onc review on the thread under treatments and medical issues. I am basically stable, the skin mets don't seem to be any worse since I started on Cap. There's no obvious improvement either but she said it was slow working, so she's pleased that it's stopped the lesions in their tracks so far, as they were growing really fast before I started chemo.

My onc says she has patients who've been on it for years, but she did tell me as I'm ER+ that once things are more under control she could switch me to a hormone therapy for a bit to give me a break.

Lesley, I've heard from others that oncs seem to differ about whether to keep you on it indefinitely, but if it's working for you and SEs are minimal I think you should be able to stay on it. Are you being treated on NHS or privately. i just wondered as I'm being treated on NHS but have private health cover through work and they give me some money instead. I was told they would only cover Cap for 1 year normally, so could your review be related to that? Otherwise at least the other onc isn't saying you would definitely come off it, so may be happy to continue if it's doing the job.

LesleyLP
Member

Re: Has anyone had success with xeloda

Hi, I've just started my ninth cycle of Xeloda. It's working really, really well, tumour markers down from 6,500 to 49 :0 I have very little in the way of side effects but think I may be just lucky in that respect, slightly sore feet but nothing horrendous, no sickness and not much fatigue either! I've been told different things by different oncs - one says I can stay on it indefinitely and the other has said she would like to review it after a year, but I will fight tooth and nail to stay on it as long as it's working 🙂

Ann_04
Member

Re: Has anyone had success with xeloda

Thanks, gail5.How did your oncoogy appt go last Friday?

For the people who have been on Xeloda for years and if it is working, do they just keep you on it indefinitely or do they try taking you off?

pinkylou - I am on 3250 per day. I am glad you haven't actually been sick. I take Metoclopramide which helps with the nausea/acid but am finding I don't need to take as much as when on weekly Epirubicin. So far, I feel better, too.

Ann

pinkylou
Member

Re: Has anyone had success with xeloda

Hi , ,I haven'tactually been sick just felt nauseous , my hands haven't wrinkled, just a not sore . I take 3600 mg per day obviously it depends on your weight, I feel so much better now I am not on taxol , x

gail5
Member

Re: Has anyone had success with xeloda

Ann, I found most SEs came on gradually, but don't really tend to wear off in the week off unfortunately. I've had problems with acid reflux and still trying to get the meds right to relieve it. A bit tired but comes and goes and just started to have a bit more bother with hands on 3rd cycle.
Pinkylou if your hands are a bit red and look a bit wrinkly (like you've been swimming) and shiny with smooth fingertips it could be SEs kicking in.

Ann_04
Member

Re: Has anyone had success with xeloda

pinkylou

I hope things continue to go well. Were you actually sick or did you just feel nauseous?

Ann

pinkylou
Member

Re: Has anyone had success with xeloda

Hi I have just started xeloda , so 14 days , I am on my week off, I am finding it quite tolerable so far. A bit of sickness just take my pill , I find usually if I eat something fatty. I am day 6 of my week off started to get sore hands but I also have started the gym do I am not sure if it is that. Let me know how you get on . Thanks

Ann_04
Member

Re: Has anyone had success with xeloda

I have just been put on Xeloda. How long do people find it takes before SEs appear?

Ann

Marilf
Member

Re: Has anyone had success with xeloda

Oh Val . . . *blushes* xxx

scottishlass
Member

Re: Has anyone had success with xeloda

Marif, We will not allow you to abdicate! You are still our Xeloda Queen! I have been on and off the Xedoa over a several years but have not reached your level yet and will take a few years to get there. So we refuse to accept your resignation. MARIF YOU ARE STILL OUR XELODA QUEEN> Much love form a fellow user! Val

Muddy_again
Member

Re: Has anyone had success with xeloda

Hi all
I have been on Xeloda since jan 09 and it has,thank God kept my spine met stable. am 42 and too young but hey that's life

muddy
Marilf
Member

Re: Has anyone had success with xeloda

OK, it's time for me to announce that, after 8 years on the peachy pills, I've stopped taking Xeloda for the forseeable future - but stopping is nothing to do with my BC mets. I've been having increasing problems with kidney function that escallated recently and put me into hospital - opinions vary about what's been causing these - diabetes is a key culprit - but my onc has taken me off Xeloda (and ibandronic acid) just in case this had a part in causing me problems. I've also come off Metformin (diabetes) and Losartan (high blood pressure) - the Metformin is particularly tough on kidneys, so I won't be going back on that either.

So . . . I hereby reluctantly resign as your Xeloda Queen - my onc hasn't ruled out going back onto it at some point in the future, but get the impression that this is unlikely, given the state of my kidney function. But . . . who knows???

Hope everyone on the peachy pills is doing well, and that they're working!

Marilyn xx (ex-Xeloda Queen)

gail5
Member

Re: Has anyone had success with xeloda

Hi Pinkylou - I'm just on my 3rd cycle of capecitabine and due to see my onc on Friday to see if she thinks it's working so too early to tell. There are a few threads on this chemo under Sedondaries: treatments and medical issues. The main one is http://www.breastcancercare.org.uk.community/forums/xeloda-capecitabine-your-top-tips-please

I don't think this one is a last resort. It's the first one I've had since being diagnosed with secondaries and I still have a number of treatment options to try if it's not working. I'm hoping to stay on it as 1 - I haven't lost my hair on it 2 - it's tablets so don't need to find a good vein and 3 - don't need to take steroids so can get a decent sleep.

Lucy_BCC
Member

Re: Has anyone had success with xeloda

Hi Pinkylou

Is this the link you are looking for? it's the BCC publication about xeloda

http://www2.breastcancercare.org.uk/publications/treatment-side-effects/capecitabine-xeloda-bcc121

You can also search the forum threads by using the 'search' facility at the top of the page where it says 'search this site', if you have any problems please let me know and I will try to help

Best wishes

Lucy

pinkylou
Member

Re: Has anyone had success with xeloda

How do you search the forums for the information on xeloda ?

Ann_04
Member

Re: Has anyone had success with xeloda

Thanks, Marilyn. I am on weekly Epirubicin at present but am not sure if it is working and was wondering what other options are like. Hence, my interest.

Can I ask why you have come off it now? Is it just a break or do they think you don't need it now?

Ann xx

Marilf
Member

Re: Has anyone had success with xeloda

Hi Ann - Side effects vary depending on how sensitive you are to the treatment and the daily dose you're taking - some of us have almost no side effects, others have the frequently-cited hand/foot syndrome and a few of us simply can't tolerate the treatment at all, so have to come off it after one or two cycles. For most of the 8 years, I was on a half-dose (1000mg x twice a day; two weeks on and one week off), so my side effects weren't too tough - I've been off capecitabine now for a few weeks, and my feet are looking & feeling a lot better!

Do have a look at all the hundreds of posts here on the BCC forums about our experiences with capecitabine - you'll see how varied our responses to this treatment have been. Hope it treats you kindly and works well for you too.

Marilyn x

Ann_04
Member

Re: Has anyone had success with xeloda

Marilyn

What side effects do you have and have you had them for the whole 8 years on Xeloda?

Ann xx

Jo_BCC
Member

Re: Has anyone had success with xeloda

Hi pinkylou,

I have put for you below the link to BCC's publication for Capecitabine (Xeloda). If you would like any further information please don't hesitate to contact the helpline team here.

http://www2.breastcancercare.org.uk/publications/treatment-side-effects/capecitabine-xeloda-bcc121

Take care,

Jo, Facilitator

Marilf
Member

Re: Has anyone had success with xeloda

Hiya pinkylou - Xeloda has helped to keep my bone & liver mets stable for over 8 years. You'll find a lot of info and discussion about Xeloda (the generic name is capecitabine) on these forums - just do a search and all our posts will come up for you to read. So many of us have had great success with this treatment, and hope you do too! Marilyn xx

pinkylou
Member

Has anyone had success with xeloda

Hi , i had a reoccurrence in my aput at and had taxol and avastin for 4 months , the tumour in my arm pit shrank but lung mets didn't work. So I have been changed to xeloda , just wanted to see what success people had with it.? I went on a xeloda site and it said it was the women that didn't have any treatment options and I thought this cant be right. Pleaseme know know. Thanks