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Xeloda / Capecitabine - Your Top Tips, please?

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

Have replied there re VAT - basically no formal process just complete a declaration at time of purchase you are isabled - secondary bc counts as such - and it will help you live your life and it's no questions asked. Helps a lot and should be publicised more.
Nina
scottishlass
Member

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

Look on to the thread called "Capecitabine and Omeprazol" as there is a post from Mrsblue regarding LLyods the Chemist and something you can buy to help pop the pills out of the packs. if you cannot find it either PM me or post on here. Anything that heps make llife easier is worth a try. Mrsblue also asks a question about VAT when buyng good there and DLA if anyone has an answer to that question it woud be helpful. I didn't know myself. val

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

Nina - if you're supposed to close your eyes to spray the eyedrops then it must be difficult to judge if you're 10cm away. No wonder you can't aim it properly.
I'm getting my first chemo 'break' after cycle 6 to let hands and feet recover. So will hopefully get supply for cycle 7 in a week instead of today. Luckily have onc appt next Friday too so will be at hospital anyway and she can check them before I have chemo. I don't have any blisters or peeling yet at least, but was starting to have problems doing fiddly things (like cleaning contact lenses) and they are a bit more painful now.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks Val - good to know I'm not alone in kinky eyes!! I spoke to the chemo nurse yesterday re the eye problem and asked if the spray was as good as drops, cos I end up dropping drops all over me before they hit my eye!! He said yes, and I bought one yesterday. Not sure I'd recommend it tho - it's just as difficult to aim right!! it's sposed to be 10cm away from eye, but you have to get the nozzle pointing at the eye and I gave up after spraying my cheeks brows etc and got my long suffering OH to apply it!!
Has interesting discussion about B6 too. Said I was taking it and that was fine, he went on to say lots of evidence it's effective but not enuf 'clinical' evidence to mean all doctors were willing to prescribe!! One suspects cost!!
He also said if handling cap was a problem he'd have no hands left! I'm inclined to believe him - he 'loves' Cap, thinks its a great drug, and he's studied it extensively, even presenting a talk at a European conference on it!! So my OH has decided he's going to be a test case and get my pills out of the strips for me and see if he has any bad effects!! It must be love!
Nina
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Nina - I'm glad your eye problem was nothing serious. I had really dry eyes on FEC-T and got eye drops from the chemo unit. I think they're called hypermellose or something similar.
Louise - I realised after last post I forgot to answer your question about returning to work. I'm still off just now but have to use up about 30 days holidays or will lose them, so will at least get full pay for them. I'm thinking of waiting until the worst of the winter is past and see how I am then.
scottishlass
Member

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

Hi Nina, I had the same problem but find it almost impossible to give myself eyedros. I had an operation to my eyes when I was very young and had stitches in my eyes and was awake when I got the stitches out. Had drops all the time as had exercises to do with a special machine where you had to fit a lion into a cage and a soldier into a sentry box ( to improve eye muscles. To this day I cannot give myself drops and I am quite a brave lady in other ways as NOTHING phases me any more! Good luck with the eyedrps. I still get the dry eye problem. I have heard that there is aproduct that you can now spray on the outside of your eye lid and was going to ask my optician about it the next time I visit him. Wishing you all the best. LOve V

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

Off omeprazole topic for a minute!
I had an aching eye! Even when shut and not in use as it were, it ached. Naturally I paniced - eye mets!! Saw optician last week and explained my drugs and fears - I knew Cap increased tear production, but hadn't thought this would cause aching eye.
After some nice yellow dye, the optician told me usually tears remain in the ye for 7 - 8 seconds. Mine were only hanging around 3 seconds, so altho there was more tear production my eyes were dry - hence the ache. So to go with all my pills, I now have artificail tears to drop in 3 or 4 times a day. Life's never boring with cancer is it?!
Nina
Lemongrove
Member

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

Anne, nope, it doesn't. Very unclear isn't it?. Have tried contacting Roche for clarification, but they will only speak to a medical professionals (doctor, pharmacist, specialist nurse). Why do the European Medicines Agency say that antacids and magnesium indegestion remedies are contra-indicated if you're taking Xeloda, and do PPI's count as an antacid?

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

Lemongrove - Well, that's od since it says that Xeloda contains magnesium stearate!

Whilst is says that antacids containing magnesium may interact, it doesn't really say if taking them at a different time would be ok, does it?
Lemongrove
Member

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

Am getting confused about whether PPI's clash with Cap or not now. Have just visited the Roche site (who make Cap), and when I clicked on drug interactions, was transferred to the Europea Medicines Agency. http://www.medicines.org.uk/guides/xeloda/breast%20cancers#medicines
All the EMA say is that indigestion remedies can interact with Cap and should be avoided (are PPI's indigestion remedies?) However, another site said there is no information on their data-base that PPI's interfere with Cap. But the pharmacy at Charing X hospital said I should defiinitely take it two hours before or after - don't know what to believe now.
PS Anne, take a look at the EMA link because it say's that magnesium is a definite no-no.

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

Louise - I take lansoprazole for acid reflux. It's classed as a proton pump inhibitor, so as Lemongrove says may be an issue with timing of pills.
Nina - that's a lot of drugs you are on. You must be rattling.
Ann - I couldn't find anything on this in my Xeloda leaflet either.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Oh joy - it seems even the pharmacists can't agree! I don't particularly trust the oncs, GPs et al on the drugs front, but I have always put faith in the pharmacists. On reading Ann's posts on Omeprazole and bone pills, and given I take calcium and Cap too, I thought I'd ask this morning when I collected my drugs. Scary aside - I walk into pharmacy - assistant smiles says hello and goes off to get my prescription without asking who I am - in there too often me thinks!!
The pharmacist checked twice, once on some kind of internet site then in her book, and said no reactions between Cap and Omprazole. She did recommend taking Omeprazole before food, and Cap definitely after, but that was it. I told her my routine - bone pill (ibandronic acid on wakening, 30 mins later all my other pills (anti depressants, beta blocker, Blood pressure, thyroxene, statin, aspirin, omeprozaloe, B6) then eat, then Cap. Exception being I take my calcium before bed on its own. She said this was exactly right!
I'm going to carry on as I am after that - I've had misleading advice from onc on anti depressant and tamoxifen when I was on that, which I got checked out with psychiatric pharmacist and onc was wrong, and I remember a GP telling me once the best person to ask was pharmacist as they know all the interactions.

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

pinkylou - I have just been prescribed Omprazole for acid reflux but I also take calcium/D3 for bone strength. I have been adding magnesium, to aid the absorption of calcium but, thankfully, I have them at lunchtime, so well away from Xeloda.

The Xeloda leaflet doesn't mention this interaction, unless I have missed it. If it is that important, surely it should say.

Ann
Lemongrove
Member

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

Just thought I would remind people that if you take any Proton Pump Inhibitors (such as Omprazole or Lansoprazole), or indigestion tablets, that these should be taken at least two hours before, or two hours after Capecitabine, as it can interfere with absorbtion. Anne 04 kindly brought this to my attention, and the manufacturers website mentions it. I also asked the pharmacy at Charing Cross Hospital yesterday, because I have been taking it only an hour before Cap (sometimes only half an hour), and am worried I may have stopped it working. To my horror, they said I should definitley take it two hours before or after Cap, and that I should report what has happened to my Onc, as it may have a bearing on how they interpret subsequent scans (in other words if the Cap hasn't worked that might help explain it). Grrr ... could kick myself.

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

Hi lemon grove , Ann and Gail , what are all these other drugs everyone takes. I haven't been told to take anything an hour before. All I take is high blood pressure tablets and i take sick tablets if I need them.
Everyone else seems to mention other drugs?
Gail , did you go back to work ?
Louise
Lemongrove
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Anne, sorry I meant to say Lansoprazole not Letrozole (brains not working).

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

Lemongrove - that's the first I heard about taking PPIs 2 hours before that Cap tablets. I've been taking Lansoprazole about 1 - 1.5 hours before the chemo pills. Will check that with my unit on Friday when I have my next appt.
I also picked up via bcpals that I should avoid fruit juice at same time as Cap pills. Checked it out with my SBCN and they agreed, so also concerned that I could have had better results as didn't find this out until on cycle 6. I specifically asked about it at first chemo appt and was told it was OK to have fruit juice with my breakfast, so annoyed I was given incorrect advice.
Lemongrove
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Re: Xeloda / Capecitabine - Your Top Tips, please?

thanks Herbgarden, I think the reason that the pharmacy did not put it on the label is because they were unaware I am taking Capecitabine. The Onc gives me a prescription for meds, like PPI's and Co-codamol, but I collect my two weeks supply of Cap from the chemo unit (when I go to have my Herceptin and Zometa). But I'm now thinking the chemo unit should ensure that patients are advised not to take PPI's/indigestion drugs together, and when I go on Thursday, I will mention it.

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

Lemongrove - Letrozole is an aromatase inhibitor. I don't think it is a PPI as well, is it?

I suppose it is necessary to avoid taking calcium and capecitabine at the same time. I do, but have never been told this.

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

Lemongrove you may wish to ask the pharmacy why they don't add it to the pharmacy label....as they do in S Wales..many people take simple antacids but if they contain aluminium or magnesium the same applies.
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Louise - great news on the shrinkage. Hope the CT scan for both you and Ann is similar.
Lemongrove - hope your cough is better. There seem to be a lot of people with colds just now, so it might be nothing to worry about. I've not got a cough just runny nose.
Val - yes I find the new post format frustrating as well.
Happyfeet - also posted on the other site. Good luck with the transfer. Hope you get better care.
Rachel - welcome to the thread. Hope you can get your biopsy sorted out.
Lemongrove
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Exccellent, encouraging news Pinkylou. Long may it continue.

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

Brilliant news, Louise. Good luck with the CT scan. I am having one at about the same time.

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

Having problems with this website , how is everybody ? I have just started cycle 5 of cap , and I had a chest x ray and things have shrunk , I have a ct scan in 3 weeks.
Louise
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Re: Xeloda / Capecitabine - Your Top Tips, please?

I have just started a thread about bisphosphates and Omeprazole, which ladies on Xeloda may find interesting:-

http://www.breastcancercare.org.uk/community/forums/secondaries-treatments-medical-issues/bisphosphates-omeprazole

I don't know if the Daily Mail article has been discussed before because there is no search facility on this site any more!

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

Happyfeet, if I were you I would go to a London Teaching Hospital such as the Royal Marsden, Charing Cross, or St Mary's ( but do be careful about who you ask to be referred to at Charing Cross - if you like you can pm me for details of my Onc). I know you live in the Midlands, but the train journey isn't too long is it?, In any case, you wouldn't be going there everyday. Also, I believe that if you are in receipt of certain benefits you can get help with your train fare (ask Lucinda about this because I recall her mentioning it).
The other thing is, I don't understand why your medical team are giving such pessimistic and defeatist information. I was under the impression that people whose cancer is confined to the bone can live for many years (look at how long people like Scottishlass, DawnHC and Belinda have been living with secondaries). I know you've had progression while on endocrine therapy, and possibly Cap, but maybe thats because they haven't hit on the right combination yet - or perhaps your cancers receptor has changed. I think once you find a specialist who knows their stuff, and is willing to pull out the stops for you, things will pick up. But you have to be pro-active.

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

Got it Happyfeet. I saw your post on the other site too. PM me if there is anyhting you are worried about. I know just how that feels as I didn't know anything about it myself because when I started Biphophonates the paperwork did not show the contra indications as they did not know aout them in the dark ages of the year 2000. So new things are being found out all the time.
Mrs Blue, I have sussed it our now. BCC are puting details of all the new posts in, even if 10 of them are the smae subject because so many new people have swithced to other sites! The want to show that there are still loads of people using the site when in fact there are fewer and fewer but any NEW person coming along will think there is lots of help out there when in fact there are just a few pages. Or am I just too synical?
Lemongrove, keep up the good work. No I have not had an usual cough but my nose is always running. Val

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

Bump. Frustrated. I want people that have helped me know that I have responded to them, but the thread just gets lost.

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

Thanks for all your comments ladies. Val you have contributed so much to these forums over the years and help sustain many of us , yet I know you have your bad times too. This is the double-edged sword of forums like these, great to hear the success stories but difficult to read of disability and the loss of some members. Lemongrove, thank you too for your knowledge and passion, you have been a very supportive member over my years with BC (Dx 2009). I find it very sad that so many of the long-standing members have all but given up with the site now. it was a lifeline to me thru my primary treatment, and now as a secondaries patient I still need and want to give support. Even though most of us do not know each other, you start to feel that you do and wonder how people are getting on. I have joined a private FB group which is great but I still wish BCC could get this forum back on track.
I saw my Oncologist yesterday and my CT scan from 3 weeks ago was not reported on so more waiting. Seemingly no appreciation of the anxiety caused by waiting for results. Last bone and CT scans 3 months ago showed progression in spine and ribs so we are waiting on the results of this one to see if Capecitabine should be stopped and to try something else. He also said he had not written a letter to my GP after my appt 3 weeks ago, when he had to address my complaint about being given my chemo prescription in the waiting room by a HCA when he hadn't bothered to check my bloods. My white count was too low for chemo, I only found out when phoned later that evening by the duty pharmacist. So, very conveniently, there is no written record of the c - up or my gripes about not getting test results or letters. No record of my nails coming off, the lack of privacy , no record of him telling me I only had one chemo option left. He said he would put me down for discussion at the MDT meeting next week, but he said that last time, and he will be away next week so how I can be discussed without him there I don't know. He did order an urgent MRI of my spine as my leg went numb on Monday. He was organising this and asking me questions whilst my husband and I were stood like lemons in his office, no chairs for patients to sit, and one HCA was talking on the phone about another patient whilst another HCA kept coming in and with notes notes. I have never treated a patient this way in all my 30+years as a nurse. I don't want to change to another Oncologist at this hospital as I already changed last year when my then Oncologist told me my CT scan was clear then called me back a few days later to say I had extensive mets to bones. Her attitude was that of hopelessness, which is why I had a second opinion at the Marsden. I think part of the problem with my current hospital is that it serves a very large county in the East Midlands and they are overwhelmed with patients, but that is no help to me. The constant battle to get decent care is so wearing. Must get that transfer underway, just wary of finding the same crap service. Best wishes end thanks to everyone x

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

Rachel when the medics carry out a biopsy the chest nodes, they do it by ultra-sound guidance, so they can see where they are going. If it was me, I would write a letter to request a biopsy, explaining concern that cancer may have changed it's receptor and that this may have an implication for treatment. Doctors are very wary of possible litigation, and the letter will create a record, which might be damaging for your doctor if they refuse your request, and it later turns out that your cancer has changed it's receptor (they would then have to prove that a biopsy was not possible).

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

Hi Ann, I am being seen at Royal marsden. I asked to be referred back in 2009 for a second opinion and I am now going again. My onc didnt want to refer me but I feel the need to have a second opion on my treatment. For my own peace of mind and to know that I am having the best available treatment.
Everyone is entitled to a second opinion under the NHS and you can choose where you have it.
I hope this helps. I did have to put in writing to my onc because everytime I asked him in clinic he fobbed me off.

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

Thanks Lemongrove, I do have some chest nodes but Onc says they are between my lungs and quite difficult to get to. But I am having a review at royal marsden soon so will ask when I see him. I always feel my onc is relunctant to anything other than standard treatment for me, but I have started to email him questions and requests and he seems to respond to these better than he does when he sees me in clinic.
I have also been on bisphosphonates nearly 8 years, has anyone else been on them that long? My onc seemed surprised when he realised this the other day and commented that he was also surprised I didnt have any kidney damage!!
So I am also wondering about Denosumab which is an alternative which has just been approved by NICE, anyone tried this?
Thanks

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

Rachel, good question about long-term effects of bisphosphonates. Very relevant to me!

I hope it's OK to start a new thread about this, so that folks who are not on Xeloda will see it.
http://www.breastcancercare.org.uk/community/forums/living-breast-cancer/long-term-bisphosphonate-tr...
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Happyfeet - When you got your second opinion from the Marsden, did you actually have to go there or was it just a paper exercise?

Your onc sounds dreadful! At my three-weekly appts, they are all about how I am coping with the drug and what my SEs are and whether I need to be prescribed anything to help. They answer all my questions and give me as long as I need.

Mind you, I did have a different onc originally and was not happy with the way she handled my secondaries' diagnosis and asked to change to someone else.

Do you have to change hospital? Couldn't you just ask to see a different oncologist, or do you think it is hospital policy to treat all patients the way your current onc does? Good luck with your search. We all need to be treated with respect and kindness.

Ann x
Lemongrove
Member

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

Rachel, I understand it is painful, but you may not need a bone biopsy if you have any node mets. I have bone mets, but my biopsy was done on chest nodes, which wasn't painful at all.
Val, it's very reassuring to read that Cap has worked for your bone mets.
Has anyone experienced a tickly cough as a SE of Cap? Since starting it I've gradually developed an irritating cough, and the Roche info leaflet say's a cough is one of the rarer SE's (I'm obviously just a tad worried that it might be something more sinister).

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

Hi all, I am now about to start my 8th cycle of cap. SEs not too bad but not sure if working as bone pain is getting worse. Due to have MRI soon.
I have been asking my onc for a biopsy, but he keeps fobbing me off saying they can only do a bone biopsy and that it will be very difficult to do and very painful.
I have read what Lemongrove posted so I am keen to have a biopsy as I havent had one since 2004 at my original diagnosis, but I am not keen to go through a very painful procedure. Has anyone had a bone biopsy?
Rachel (no longer 37 now 41 )
scottishlass
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Capecitabine has kept me going for years. I have been on it and off it and on it again many times and each time I re-start it my tunour markers are halved....yes halved. I know it works for my bone mets and the ony time I stopped it was beacuse I suffered badly with Planer Planter syndrome ( sore hands and feet in everyday words). Now that my dose has been reduced to a amanagable dose I will probably remain on this drug for as long as it is working for me. I must have fist had the drug about ( guessing here) 7 years ago. Hope it continues to work for all of you, Love Val

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

Ann - you're right it would help if the oncologists could agree on treatments. No wonder people want to transfer hospitals. I also find SEs often worse on rest week.
Lollypop59 - hope you continue to have minimal SEs
Nina - hope you get better results on vinorelbine if you have to switch.
Happyfeet - your previous onc sounds awful. They should treat us as adults and have a bit more compassion. I'm sure there are more options out there than eribulin as it sounds like you have mostly had hormonals before.
Lemongrove - I think cap is often combined with tax. I had FEC-T and developed skin mets within weeks of finishing tax so guess my onc doesn't think it would be effective for me to take it again.
I get the impression cap is often the first treatment of choice for secondaries because it is relatively doable, but not sure whether it gives the best results. There seem to be too many ladies with bone mets taking it for it not to be effective, they wouldn't waste money on it if it wasn't going to work.
Lemongrove
Member

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

Just thought I would chip a couple of comments (particularly to reassure Happyfeet).

(1) As to whether Cap works for bone mets. My understanding is that Cap is less effective on bone mets than visceral mets. However, that does not mean it is completely useless on bone mets (only that it is not as effective). All it means is that Cap works less well on bone mets than visceral mets.
(2) Whether chemo in general is any good at reducing bone mets. My understanding is that the most effective chemo for bone mets is Taxotere, but as many will have received FEC T before Cap, they will have already had Taxotere (if not it might be worth asking if it would be an option). Again, my understanding is that the reason those of us with bone mets are put on Cap, when it is not the best chemo for bone mets, is because our disease has progressed while taking other treatments, and there is a possibility that cancer cells could be lurking unseen within organs (that was the explanation given to me by my BC Nurse specialist anyway). So taking Cap, is not a completely futile exercise.

(3) As to options after Cap. If it was me, I would ask for a second opionion to review the treatments I have already received, and to establish if anything has been missed out (for example in my case I have received FEC, but not FEC T. Neither have I had any anthracycline chemo's, which I think they are supposed to prescribe before resorting to Cap). I would also consider having a biopsy of secondaries, to see if my cancers receptor had changed again. Because cancer that has gone from, for example, ER+ to Her2+, can then go back to being ER+ again, or Her2- or ER- or triple negative. Obviously if cancer has gone from being ER+ to Her2+ then Herceptin or Lapatanib would probably be required, but if it had returned to being ER+, then maybe endocrine therapy might be suitable again.
(4) Happyfeet, you're dead right to be assertive in my opinion. Personally, I think anyone in this day and age who still thinks doctor knows best, and will always give the treatment required irrespective of cost needs a reality check. In my experience, specialist doctors have a very narrow expertise, and are not always aware of other/new treatments - and even if they area aware, they frequently fob patients off, because they have budgetary constraints. In addition there is a layer of bureacracy that prevents doctors from taking unilateral action (for example if a doc prescribes something NICE say shouldn't be funded they have to produce a written explanation for their actions). My tip though is to use assertiveness strategically. Only ask a question verbally once. If it isn't answered properly, then put the question in writing. Doctors are very litigation savvy these days and know that they have to give an honest answer in writing. Also they are stuck for time, so writing is time consuming, and teaches them to answer questions properly first time round.

Happyfeet
Member

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

Ps by saying I am "challenging" my Oncologist, does not mean that I am rude/loud/shouty etc! I try to be assertive and want my test results and to be treated as an adult. He doesn't like that.

Happyfeet
Member

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

Thanks for your comments guys. Nina, I challenge my oncologist frequently! He treats me as if I'm a bit of a nuisance for asking, but as a nurse I want to know the ins and outs of everything. My feeling is that my present hospital in the East Midlands does not do much for us Secondaries ladies, I feel written off and uncared for. Ann, I just asked my GP to refer me for a second opinion at the Marsden, they suggested some treatments but it is too far for me to transfer there. However, I do I intend transferring to another hospital about an hour from where I live. The set up seems very different and they have a secondaries specialist nurse. My present Onc never asks me about pain, or side effects from the Capecitabine, and when I tell him he just says stop the chemo then. He has even told me in the past that there are people worse off than me ( as if I don't know that) and said to my husband that if "she's going to be like this" (i.e. upset and challenging) there's no point in treating her". Hmm, very caring. I have just come back from our local hospice/treatment centre, having had a head massage and they are so caring there, but it makes me so emotional. I HATE being a patient, am so used to being the nurse! Oh well, will see what my latest CT scan shows up tomorrow and take it from there. Have already had Vinorelbine in combo with Capecitabine (don't understand why my Onc gave me both) but was unwell with it, dropped my neuts, ended up in hospital. Feeling so vulnerable. Love to all you lovely people. Thanks for taking time to reply and support when I know you all have troubles of your own. Xxx

LouiseL
Member

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

Nina, I think the chemo you are thinking about is vinorelbine, also known as navelbine - I was on it for 18 mths and I didn't know I was on chemo. Hope it works for you.
Louisex

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

Happy feet - I think you should 'challenge' your onc - when the hormones failed me the onc said she had a choice of next step between Cap (which she chose cos she used it more often) or ven / nav .... not sure of name but it's oral and I know Dawnhc and Scottishlass on the bone mets thread will both know what I mean - they've had it. I think from my digging that the problem with chemo and bone mets is they are not AS effective as they can be for tissue tumours, which is why some oncs like mine and yours are disparaging about them, not realising the effect they have on the patient.
I fear I'm going to be in your shoes next month, with Cap failing me and no hormones available. But I think I'll be offered the other oral chemo - wish I could remember its name - and assuming it's going to be as bearable as Cap - not great but doable - I'll try that. If / when it comes to being told that's it, nothing we can do, I'll push for a biopsy to see if I'm one of the 10 - 15% who change to HER+ like LemonGrove before I concede they are right.
Sorry Ann - I get easy confused!

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

Happyfeet - I wish you good luck with your scan results. I can't imagine they waste resources on chemo for bone mets if it never works.

Incidentally, how did you obtain the Marsden appt? Do you live near? I was wondering whether to ask for a second opinion if it gets to the stage that they say there are no more options.
Happyfeet
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks Louise x

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

Hi happy feet , I know lots of people that have been on chemo for bone mets and it has worked. I understand there are alot of treatments available. They will find one for you. Let me know how you get on.
Louise
Happyfeet
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Morning everyone. Am feeling quite distressed reading comments about chemo not working for bone mets. I was diagnosed with extensive bone mets thru all of spine, ribs and pelvis in June 2011. Arimidex then Exemestane failed to halt rising tumour markers so my Oncologist at the time prescribed Ibandronic acid and said basically that was all she could do as chemo was ineffective for bone mets. I had a second opinion at the Marsden then changed Oncologist at my local hospital, and have now had 14 cycles of Capecitabine. My tumour markers have come down to normal levels but CT and bone scans both show further bone progression. Onc is not sure what is going on. Have appt tomorrow for results of latest CT scan 3 weeks ago, Onc said he might change me to my last option - Epirubilin. But what's the point of putting up with the side effects of chemo ( even if Capecitabine is a more doable one, still doesn't make me feel great). Should I say no more chemo thanks and see what happens, only that would feel like I'm giving up. I hate this disease. No pills available for fear, uncertainty, and general p...ed - off! Best wishes to everyone - still keep visiting this site, hoping it will improve ....

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

Nina

It is not me who is having the problem over Vit B6, but Gail. My onc prescribed it as soon as I told her I had sore heels - and they are ok now.

Incidenatally, you gave the impression from your earlier post that your onc said that any chemo wasn't effective for bone mets, not just Xeloda, which was what I found particularly depressing. I do hope she is wrong!

I hope your rest week goes well. Strangely, I find that my gastric symptoms are worse during that week.

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

Hi all - jus checking in again! Counting down til Thurs am when I can see back of cycle 2 and have a rest week!! In truth, touch wood, the reduction in dose seems to be helping fatigue wise - I'm back to my old standard 10 - 12 hours, which while it's not great, it's copeable. I'm having to accept I can't do things I want to - I'm trying to rejig th ekitchen storage a bit, and it seems like its going to be a 20 stage exercise done in several small stages - I've done stages 1 - 6 this pm, but my back is crying enough and I'm actually listening!!
I wish oncs could be consistent! You'd think with something comparitively 'minor' like a food supplement, there'd be no arguments but sorry you're getting different advice Ann - you have enuf to worry about without being pulled 2 ways. I remember similar arguments about the cold cap and whether it negated some of the effects of chemo. Must admit I went with it and am glad I did and would do so again if I ahvea chemo which it might work with.
I did some googling re bone mets and Cap too, trying to avoid US sites but not always suceeding - I relied on google to filter them and it did some but not all. One of the sites I found proabably gives the source of eth 'cap doesn't work for bones' brigade - I think it said 15 -20% of women it works for - I just hope the boney ladies among us are in that group.
Nina
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Re: Xeloda / Capecitabine - Your Top Tips, please?

hi pinkylou,
i am not triple negative, bit i am on capecitabine, and tykerb, has i am her2 with ibc and i have lung mets dx in feb, and i am on my 2nd cycle now, so far no side affects. apart from fatigue.