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Information on Xeloda

17 REPLIES 17
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Re: Information on Xeloda

Thanks Gill Like I mentioned previously it helps to know your not alone out here. I'll try to keep posting to let you know how I.m getting on.

Linda

Re: Information on Xeloda

Hi Dot

My own onc never said very much throughout the clinic sessions when i was first getting chemo (taxol). When I finished the chemo a year ago I had sent his secretary a list of questions to go through at the last clinic appointment and he was quite happy to go through everything i had asked. what he did say then was that he nevers volunteers much information because some people don't want to know.

The point is that it might not be a case of assuming you know things, your onc might be working on the basis that you don't want to know. So you are absolutely right when you say you need to ask...

hope things go well

gill

Re: Information on Xeloda

Hi Dottie

I was diagnosed with brain mets (already had bone, liver, lung mets) last October and had ten doses of WBR over two weeks. First night was quite sick but got additional antisick and tolerated the rest quite well. The idea of WBR was pretty scary, but it was ok overall.

As Jenny has mentioned the WBR makes the brain "leaky" (my oncs description) and allows larger molecule drugs such as herceptin to cross the blood brain barrier. I'm due to start on Xeloda in the next couple of weeks and hoping for a similar response to Lynn!

I've already posted a couple of times about lapatinib so won't bore anyone further! But (quickly) ...all trials have now closed other than ALLTO, which I beleive if for primary? The LEAP trial that was running out of the Marsden and other locations has now closed (cancer research website is good for information on open trials). I'm being treated at the beatson in glasgow but had got a referral to the marsden for a second opinion (nothing to lose 🙂 ) so i had discussed lapatinib when i was down there. Primary difference between lapatinib and herceptin is that the lapatinib molecule is small enough to cross the barrier without sticking the microwave on high and hanging around the kitchen all day 🙂 Unfortunately, the NICE recommendation was that funding won't be made available. (sorry - wasn't quick after all)

As far as I'm aware there isn't an issue with Capecitabine being prescribed?

hope this helps

Gill

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Re: Information on Xeloda

Dottiediz

Before these type of radiation treatments, the molecular makeup of the blood/brain barrier is too small which means that medicines which have a larger molecular makeup cannot get through. I think that, after you have had WBR or gamma knife, the blood brain barrier is weakened and so then the molecules in medicines such as xeloda CAN reach the brain. So it is quite usual to be prescribed xeloda after WBR or gamma knife surgery. Xeloda is a standard chemo in the UK and you would probably be prescribed it by any hospital. (I have been on it for two years now, for my liver mets).

If you look on bcmets.org, at scientific extracts from the San Antonio Breast Cancer Symposium held late last year, there is news of new treatments which will hopefully be available to treat brain mets in the future, but I am not sure how near to completion the trials are.

Jennyx

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Re: Information on Xeloda

Hi everyone,

Thanks Marilf for your comments... it has given me a lot of hope for the future - just hoping it works for me as it has for you and a lot of the others. Every 9 weeks sounds like heaven to me - but obviously the onc team have to monitor every patient quite closely, but at least I have something positive to hold onto. Also, I want to say thankyou for everyone on this website for every post cos I may not post a lot but I must say at the moment it is my life line. I have been in remission (or whatever you want to call it) for a number of years so have not logged on too much. I feel so sorry for that but at the time I just wanted to forget that I even had breast cancer.

Take care all of you

Love Debsx

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Re: Information on Xeloda

I had Xeloda every 3 weeks on a Wednesday and blood tests the Monday or Tuesday before (ie. 1 or 2 days before). My onc took me off Xeloda for 1 cycle while I was on holiday for just 5 days, then back on it for the following cycle.
Talk with your oncologists and see what they think.

I've only had NHS treatment and have never felt that the drugs I have been given were based on anything other than clinical need.

Lynn

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Re: Information on Xeloda

Debs -- I've been on Xeloda for over five years (liver & bone mets), most of the time on a very low dose (1000mg x twice a day). I've also had "normal" bloods & LFTs throughout this time, so my onc is happy for me to take away three courses of Xeloda each time I see him, which means I go to hospital (Christie's) every nine weeks for my blood tests, a chat with the onc team and collection of Xeloda. I know this is a pretty unusual situation -- as long as I'm "stable", my onc team are happy for me to see them as infrequently as this, and I can always arrange to see them sooner than the nine weeks if I have any problems.

I think your onc team will want to see you every three weeks when you start this treatment, to check your bloods and see how you're doing on it. Also, and it's a bit of a long shot, there might be some possibility for you to have your blood tests and get your Xeloda tablets in Spain -- EU countries have reciprocal health agreements, so do ask your onc team when you see them. And good luck with the Xeloda -- hope it works well for you!

Marilyn x

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Re: Information on Xeloda

Hi ripley,

Thanks for that info..... every 6 weeks would be great, I'll just have to wait and see. Are you getting many side effects from this treatment. I wonder if there is anyone else out there that only has to go every 6 weeks. Wish you well.

Love Debsx

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Re: Information on Xeloda

Hi Debs

I have my bloods taken a few hours before my clinic appointment for each new prescription/cycle which tends o be on the last day of 3 week cycle (i.e. last day of week off). The pharmacy can't dispense it without blood screening, but I have been told that once my side effects are stable they will change to 6 weekly appointments and dispense two prescriptions in one go. Hopefully you will have a smooth ride and once you know what your side effects you will only need to fly over every six weeks.

Good luck with your treatment.

x

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Re: Information on Xeloda

Hi,

I will be starting Xeloda tomorrow! I was just wondering about the blood tests. I know they have to be done every 3 weeks but can anyone tell me is this in the rest period. The reason that I am asking is that we spend most of the summer in Spain and I will have to return every 3 three weeks now, but I was thinking if i could have the blood test in the rest period it would then give a bit of leeway if you know what I mean. I was also wondering about trying to get the Xeloda in Spain and having blood done there but i don't think this will work. Anyway will find out a bit more tomorrow when i see the nurse and prof, but if anyone knows the timing of the blood tests i would appreciate it.

Thanks

Take care
Love Debsx

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Re: Information on Xeloda

I am very grateful for all your comments on this subject. Yes I do have a Breast Care Nurse but I feel when your an NHS patient it comes down to money today.I just get the feeling there is a limit to what they will do for you or tell you what's available. It feels like you have to fight to find everything out.

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Re: Information on Xeloda

Dear Dottiediz
I too have brain mets, diagnosed in Feb 2008, which are inoperable. I had steroids to shrink the oedema (swelling) and then WBR to zap the tumors. This seemed to work very well, but I was still on a small dose of steroids in the summer as there was still some oedema. Then my Inflammatory Breast Cancer recurred and I was put back on herceptin, but this didn't seem to be having much effect, so I was prescribed Xeloda as well. This pretty much immediately cleared up the IBC, and when I had my next brain scan a few months later, the brain mets had also shrunk and there was no oedema. This was an exceptionally good, and not entirely expected result. It looks like the Xeloda has managed to cross the blood/brain barrier and work on the brain mets.
I am now doing so well that I am no longer on the steroids or Xeloda, just on herceptin - which I find has no side effects. All of these treatments were from my local NHS hospitals in Norfolk.
So, to answer your question, I have had Xeloda and it worked really well, with comparatively few side effects compared with other chemothreapy (the worst of which was over-hot hands & feet stopping me sleeping, and damage to finger & toe nails). But this was after having WBR as my initial treatment.
Regards, Lynn

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Re: Information on Xeloda

Dottiediz,

I think Xeloda is used for various cancers including bc mets.... and oncs will prescribe it as normal on NHS if they think it appropriate. As I understand it there is a barrier round the brain that chemo drugs do not cross - so I suppose this is what medics are referring to as body brain block...?? I think you should ask for more information. Do you have a breast care nurse you can talk to? or ask your onc.

Lottie

Re: Information on Xeloda

Hi again Dottiediz..I'm not absolutely sure of this info but I think if you are her2+ Tykerb (Lapatinib) crosses the blood brain barrier. Do you live in London? Anyone anywhere in the UK can get a referral to the Royal Marsden via their GP or oncologist. Xeloda seems to be available at most hospitals. I've had friends who have had both WBR and Gamma knife and there are some posts here if you go into search, especially on WBR. There are always lots of drug trials too..if you haven't already found it a friend with mets knows a good website for trials I'll send her an email to see if I can pass it on to you. Belinda..x

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Re: Information on Xeloda

Thank you both for your comments. I have mets in the brain and am trying to find out everything I can, All my Onc is talking about at the moment is WBR and possibly Gamma Kinfe. They keep talking about the BODY BRAIN BLOCK for Chemo.and these nothng else they can try but when it's your body you'll try anything wont you. But it's not easy getting help and info on these new treatments.

Are these type of drugs issues in the realy big hospitals in London etc?

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Re: Information on Xeloda

Hi Dottiediz

I've been on Xeloda for over five years, most of this time on a low-ish dose of 1000mg x twice a day; two weeks on & one week off. It really shrank my liver mets, and (along with an aromatase inhibitor and a bisphosphonate tablet for my bone mets) has pretty much kept me stable since my secondary BC dx in October 2003. I know that some who have tried it haven't had such good results, but hope it works for you, and that you tolerate it well. Like Belinda, I use plenty of goo on my hands & feet, but with my reduced dose, the hand/foot side effects aren't too bad.

Best of luck with your treatments!

Marilyn x

Re: Information on Xeloda

Hi, this is the info (below) I copied from the MacmillanBackup site when I first started Xeloda treatment. (Capecitabine is the other name for Xeloda) Lots of forum users here are on Xeloda. I've found it a very tolerable chemo and so far it's working well. I have bone mets and have been on the highest dose of Xeloda for several months now and will stay on it for as long as it's working. Your dose can be lowered if you have side effects. I use moisturising cream on my hands and feet as they can become dry and cracked from the chemo but luckily I've had no other side effects. Good Luck if you're about to start Xeloda. Belinda.

Capecitabine is a chemotherapy drug that is given as a treatment for many types of cancer, including advanced bowel cancer, breast cancer, stomach cancer and oesophageal cancer. This information describes capecitabine, how it is given and some of its possible side effects. It should ideally be read with our general information about chemotherapy and about your type of cancer, which give more advice.

What capecitabine looks like
Capecitabine is available as peach-coloured tablets of 500mg, and light peach-coloured tablets of 150mg.

How it is given
Your doctor may want you to take a combination of 500mg and 150mg tablets. You need to make sure that you are taking the right dose.

The tablets should be swallowed whole with a glass of water, within half an hour of the end of a meal, as capecitabine works best if it is broken down in the stomach with food. You should take them in the morning after breakfast, and then again after your evening meal, so that the doses are spaced at least eight hours apart.

If you have trouble swallowing capecitabine tablets, they can be dissolved in a 200ml glass of warm water. The mixture should be stirred with a spoon until the tablets are completely dissolved and drunk immediately. The glass and spoon should be washed and kept separate from your other crockery and cooking utensils.

Capecitabine tablets are usually taken for a number of days, followed by a rest period in which no tablets are taken. This can vary depending upon the type of cancer you have. It is important to follow the instructions carefully and take the tablets as directed by your doctor, nurse or pharmacist.

You should only get the tablets from your hospital. You can't get a repeat prescription from your GP.

Possible side effects
Each person’s reaction to chemotherapy is different. Some people have very few side effects, while others may experience more. The side effects described in this information will not affect everyone who is given capecitabine, and may be different if you are having more than one chemotherapy drug.

We have outlined the most common side effects and some of the less common ones, so that you can be aware of them if they occur. However, we have not included those that are very rare and therefore extremely unlikely to affect you. If you notice any effects which you think may be due to the drug but which are not listed in this information, please discuss them with your doctor or chemotherapy nurse.

Feeling sick (nausea) and being sick (vomiting) This is usually mild. Your doctor can prescribe very effective anti-sickness (anti-emetic) drugs to prevent, or greatly reduce, nausea and vomiting. If the sickness is not controlled, or continues, tell your doctor; they can prescribe other anti-sickness drugs which may be more effective. Some anti-sickness drugs can cause constipation. Let your doctor or nurse know if this is a problem.

Sore mouth and ulcers Your mouth may become sore or you may notice small ulcers during this treatment. Drinking plenty of fluids, and cleaning your teeth regularly and gently with a soft toothbrush, can help to reduce the risk of this happening. Tell your nurse or doctor if you have any of these problems, as they can prescribe special mouthwashes and medicines, which prevent or clear any mouth infection.

Taste changes You may notice that your food tastes different. Normal taste will usually return when your treatment finishes.

Diarrhoea This can be quite severe, but can usually be controlled with medicines. If you have diarrhoea more than 4–6 times a day, contact your hospital doctor for advice immediately. You may be advised to stop taking capecitabine, but it is often possible to restart the treatment at a lower dose. It is important to drink plenty of fluids if you have diarrhoea.

Abdominal pain and constipation It may help to drink plenty of fluids, eat a high-fibre diet and take gentle exercise. Sometimes you may need to take medicines to stimulate your bowel. These can be prescribed by your doctor.

Loss of appetite A dietitian or specialist nurse at your hospital can give advice and tips on boosting appetite, coping with eating difficulties and maintaining weight.

Skin changes Soreness and redness or darkening of the palms of the hands and soles of the feet (sometimes known as palmar plantar syndrome or hand-foot syndrome) can occur. You may be prescribed vitamin B6 (pyridoxine), which can help to reduce this. A rash and dry or itchy skin may also occur. If you notice this, let your specialist know.

Tiredness and feeling weak You may feel very tired. It is important to allow yourself plenty of time to rest.

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Information on Xeloda

Is there anyone out there that can tell me anything about Xeloda. Anyone on trials with it or be lucky enough to get it given to them by their oncologist.