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

Hi Moijan,
My onc has said that the results for Ibrance are very impressive and that, assuming it is made available here, it would be suitable for me. I'm E+ and Pr+. He thinks it is a better drug than everolimus which he thinks overall has worse side effects. xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Yes Carolyn, i totally agree with everything you have said here...Apparently, if the NICE group ok'd it, the price would come down and vice versa..chicken and egg.

 

I did ask a lovely lady onc reg what groups it worked for..she was at the recent conference in the US where it was presented...she said the results were amazing for all Oes pos people and that she thinks it will be available by the end of this year because of this evidence.

 

Where NICE is concerned tho, there are no guarrantees...lets cross all our digits and our legs, and eyes!!

 

💙💚💜💗💛🌺🌹🌷🌸💖🌻✈️🛁

moijanxx

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

Moijan
These drug companies need to stop thinking about their fat wallets and think of lives being saved.
Yes a lot of ibrance patients do seem to get hair loss but it seems to be when its paired with leyrozole . The latest posting on inspire indicates it works better as a first line treatment not a last resort though.
Here's hoping though as lots of our ladies are all hoping for the chance to try it.
Carolyn xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Carolyn, yes, I think the usa ladies...because they are all basically on private health care and pay their oncologists...have access to their records....I have been reading about Ibrance in detail and like evrryone rlse I hope we can have it here soon...it costs about £7000 per month...which is a bit outrageous. So I cant see that the NICE group will allow us all to have it until the price is reduced!

 

i was told that when/if I have 4 Failed therapies, they can ask for it on compassionate grounds..I think thats to do with the arrangement they had with the drug companies, but im not sure that Ibrance is still one of the drugs that were available earlier.   The other thing is.....Ibrance does have a lot of Netrapenia associated eith it...some trial results indicated 75% and also hair loss is quite common too. So im hoping this drug may get modified/improved at some stage.

 

hugs, Moijanxx

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

Hi ladies, 

 

yes Waffles, I too look at the inspire website and find it useful. I also watched the 'the truth sbout cancer'

seminars earlier this year. They were very insightful..they were about 90 minutes long and their first one was all about chemotherapy....these seminars were created by a group of usa oncologists and other proffessionals. they were very informative and gave me pause for thought.

 

I would say, tho that If you do decide to watch them...do think very carefully and chat to your oncologist before deciding to change or add any treatments. I had a long chat with mine and decided it was much safer to carry on with the treatment plan offered at my hospital.

 

 the one very helpful site I personally value the most  highly is 'Cancer active' administered by Chris Woollams. This one is very kind and very sensible. However, I always chat to my oncologist about any new suggestions and am guided by him. 

 

Huggy thoughts,

 

Moijanxx

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

Hi Carolyn,
I hope Ibrance wiĺl be available generally soon . It would benefit so many of us. xxx
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hiya waffles
I also dip into inspire website and as its US based it surprises me how much info they have but I think I read that they have direct access to their records at their hospital!!
I like to read the updates on ibrance which is available there and only on trial here still.
Carolyn xxx
Member
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Moijan,
Yes, you are right. We are certainly vulnerable to what we read online. However, I do benefit from looking at the American Inspire Forum as it has a lot of very knowledgeable people postng and interesting info about new breakthroughs. I like to be informed about the treatments available so I can feel like I'm taking an active role in my treatment. I feel our own forum is so helpful with this too. However, just googling the internet exposes us to a lot of false information and quackery much of it, as you rightly say, unreferenced.
Please don't think your post read like a lecture. I always enjoy reading your posts and find them very enlightening. I think you are very generous to share your experience and knowledge with the rest of us. Keep posting.
Best wishes xxx


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

[ Edited ]

 

Hi Waffles, and everyone else.

 

i understand totally where you are coming from....id heard less than 10, but I recently checked with my onc and he said that they were very old statistics and that in the past few years so many new drugs/options have come out that things have really changed...and the thing is with statistics....1/ we dont know how valid the studies were that they are based on 2/ we dont know how ill people were at diagnosis....and 3/ most important....they are continually changing!!

 

 

Waffles, we do all go through these kinda thoughts.....I definitely do. There are times when I get despondent about all sorts of things.. some of your posts have been very helpful to me.

 

Regarding Google, well I search for things a lot on there, but i dont  rely on it for health info at all because most of it isnt referenced!

 

 Having said that....well,  even some of the studies that have been done have been criticised for having flaws. I am not en expert in anything - especially statistics, but I do have a lot of healthy skepticism, because we are all individuals, with our own lives, different experiences (and food fads) I just believe that almost anything is possible!  

 

For example, I was convinced that Cape failed for me, because id had a break( after around 23/12)

And that was why bc became resistant! But lovely Barton has had breaks and it has been fine, so im actually tempted to try it again if need be..!maybe it will work for me later if my bc changes its dna again!

 

I have edited this post because i just want to apologise if it sounds like a lecture.....its not meant to be.....

i get just upset because in our position, we are very vulnerable to all the info and rhetoric out there.....it always 'sounds' true...but it isnt always.

 

Love and huggy thoughts to everyone,

 

Moijanxx

 

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Member
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Registered: ‎18-11-2015

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

Thanks Ladies,
It's great to hear from people who were on Cape for a while. That makes me feel a lot better. The internet often gives the worst case scenario or out of date information. I remember when I was first diagnosed with IBC 10 years ago I read on a site that there was a 0% chance of surviving 10 years. I asked my onc of that was true and he said it was probably true only for people who didn't have any treatment. I should have learnt my lesson by now.
Best wishes xxx
Member
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Registered: ‎26-07-2014

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

Morning everyone, hope you are having a good bank holiday. I don't often read this thread because I'm off  Capecitabine but I just wanted to say that I was on it very successfully for two and a half years! It's been my best secondary treatment so far so I hope that it works well for you.

 

Also, for anyone wanting anti diarrhoea meds, Superdrug do their own brand Instants, that just melt in the mouth and work really quickly, much cheaper than Immodium! xxx

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

Morning Waffles. Glad you are only getting mild se's at the moment. Me too, and it's such a relief! Actually managed to do some walking yesterday, all be it with lots of sitting down inbetween (get back pain from compression fractures after a while).

 

Shame about the food aversions! The only trouble I have with food aversions is getting fed up with trying to find something to eat in the mornings with my pills! I hate having to have breakfast, and I really don't like biscuits, although have used those for pill taking for a while. What I don't like is having something with the pills that I like (ie rice pudding), but then ending up hating it because I have had to take pills with it!

 

Anyway, I hope we have put your mind at rest re length of time you are able to stay on Cape.

 

Hugs. Barton.x

Member
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Registered: ‎18-11-2015

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

Hi Barton and Moijan,
Thanks so much. You can both be relied upon to give such good advice. I know I should stay away from Google as it can ruin my day sometimes especially when scans are coming up.
I feel well at the moment with only relatively mild side effects, the worst of these being food aversions. I do still have aches and pains but nothing too bad.
Thanks again ladies xxx

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

I was on Cape for about 23 months before it failed.  Think i also saw that quote about 'offering an average of 7  months extra time' somewhere , too Waffles.. But those sorts of estimates dont really impress me, because obviously it doesnt work for some people, but how do they know what exactly their initial prognosis was,,? I mean, maybe some ladies were very ill before going onto cape...and all of the ladies would have had different pronoses from each other, so we arent comparing like with like.

 

What im trying to say is, a little pinch of salt is required! Anyway, I wish you well on Cape, im quite envious!

 

huggy thoughts,

 

Moijan😎💜💙💚💛💗🌸

Member
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Registered: ‎01-05-2012

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

Hello Waffles, I think you might have come across a myth. I have heard of many people being on Cape for years until it finally failed. There is an American site with a Cape thread that has some on there for years. I believe one of our dear ladies (since departed, I fear) was on it for 9 years (someone please correct me if I have that wrong!). I haven't been on it amywhere near that long, but I habe been on it for about 2 years, with an 8 or 9 month gap after the 10th cycle, when I was on Exemestane (which unfortunately let me down).

 

I know one lady was only allowed to do 6 cycles before her Onc took her off it, but she was told at the start that it would only be for 6 cycles, but I think that was probably a (very unfair) quirk of her Onc.

 

Hope this helps, and hope you are OK.

 

Hugs. Barton.x

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

Hi all
Cape has been working well for me for 8 months. I read somewhere that if the drug works at all the average it does so for is 7 months. Obviously, I should keep off google but as I have a scan soon I'm a bit worried I may be reaching the end of the drug's usefulness.
I know that some of you have been on this drug before. I notice you said that Moijan and Barton too I think. How long did it work for you then. Best wishes
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Re: Xeloda / Capecitabine - Your Top Tips, please?

Oh, Tournesol, so sorry. Trust me to put my big foot in it, Thank you for sharing about your situation.

Lets hope you feel better soon. I had a lot of success with my Cape for quite a while. Hope it works well for you., Im also sure you are a much better patient than I...and I was referring more to being a patient in hospitals, rather than hospices...i have not been inside the doors of one. But, i am going to go to see my local one soon, as I have heard on here that they often have freebie treatments lke aromatherapy and reflexology, and other kind therapies and it appears staff are usually  lovely and supportive.......
Love to you

Moijan

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

[ Edited ]

 

 

Member
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Registered: ‎01-05-2012

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

Thanks Moijan. I did probably have too much dark chocolate yesterday so maybe that didn't help. And it's hard to resist cake as I'm on quite a high dose of steroids for the brain mets. I know it's bad! Maybe I'll ask for some fruit.

 

I hate being a patient too but I have nowhere else to go (no suitable family to live with and not well enough to live alone in my rented flat which is not suitable anyway) so unless I outlive my short prognosis I'm in hospice for the duration unfortunately.

 

Tournesol x

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

.

 

hi there Tournesol and nice to also meet up with Barton, George and everyone else.

 

 

is it me Barton? But this website keeps throwing me out of the forum and back to signing in when I try to post!!

 

 

tournesol, I, like Barton was given the same drug she had for diarrhoes, it works very quickly. Actually, two paracetamol can also slow down the bowel if the diarrhoea isnt  very bad.

 

i am on almost, well actually permanent antibiotics and I think that hospitals and hospices are very careful when it comes to diarrhoea as there are some hospital acquired tummy bugs which can occur, especially after a bout of antibiotics....that means they will be cautious about advising you to take drugs to stop diarrhoea until they are sure it isnt c difficele or other.....

 

basically, as lovely Barton says, follow their advice. Food like, stewed apples, eggs and natural yoghurt all can help , but slower. The things which I find upset my tummy are too much chocolate, sugary cakes, rich cheeses and overdoses of prunes apricots etc. but my worst culprit is chocolate!

 

I do hope you feel better soon Tournesol. i hate being a patient..I was given a Gold Medal for being the UK s worst patient!

 

George, was it you who said the bcn has been unhelpful? I am so sorry, I find that if someone on the staff is unhelpful like that, it really adds to my other load. Im wondering how much training the onc nurses have in handling patients at your hospital! I have met nurses like that in general hospitals, but onc. Nurses..no.

 

was thinking that you could try asking your oncs sec/pa if she could ld email it to you..one could say, " look, I really would be grateful if you could do this for me just this once, as the 'poor bcn' has such a large workload, id rather not bother her!  

 

Of course you wont have anyone to chat it over with, (theres always us or the bcc nurses)but sounds as if she may  not have much time to give you anyway. Maybe she is in the wrong job frankly!

 

I think someone else on this forum posted that she always. gets results in the post or email as she lives a long way from the hosp...... just a thought..or they could email it to your gp and you could chat to them.....

 

i feel very upset for you, Cancer care is not meant to be this way......i hope your next hospital is better.

 

lots of huggy thoughts

 

Moijan