Hi Wheelie,

Sorry to hear you are having a rough time with Capecitabine. I've just completed my 2nd cycle of 4 and haven't suffered as much as you. I did go off food and drink but found that little and often is definitely the way, and anything you want, don't just limit it to good food. So long as you get something in you! Have you tried the ensure drinks? They are very rich and will at least give you 300cals a shot. Get a prescription from your GP for them.

I've had lots of side effects but nothing too debilitating. My skin has got very dry and I have just got a cold sore and a bit of a sore mouth.

I hope you have told your oncologist and they are aware you are not taking the tablets?. It maybe that they can reduce the dosage to a more acceptable level? I'm currently on maximum dose 2500mg twice a day. Hard going but I will get there.

Let me know how you get on? Big hugs and try to take it easy xx

Josie

Hi

Like Josie I was on the max dose but as part of a drugs trial. I unfortunately had to stop this drug as I ended up with severe chemo toxicity. I recovered and was revered back to my original hospital and given a different chemo. I am currently waiting for surgery to remove my tumours.

I hope you speak to your oncologist. Hopefully he/she will assess your levels and either reduce the dose or change You to something else.

Good luck and I hope you feel better soon.

Nidri aka Mandy

Hi Wheelie

First of all, I am very sorry that your cancer has spread - it is a nasty little monster! And also what hell you must be going through with all the different IV chemos. And yes, you are definitely in the right place - this forum is amazing and we are so lucky to have access to it.. There are so many people out there dealing with their cancer, or the cancer of a loved one, and it is really reassuring to find that other people are going through the same experiences - for example, you are the first person I have had contact with who was prescribed Capecitabine!

I too had breast cancer (2009  - oestrogen), mastectomy, reconstruction and a 5-year prescription of tamoxifen (which I didn't take). I was told I was 'cured' so no chemo/radiotherapy or follow-up.

In 2012 it returned, but straight to my spine, ribs and shoulders. I was put onto Capecitabine immediately for 4 years, and yes I experienced side-effects - but not to your level. My taste buds changed completely - couldn't take strong flavours (spicy, salty or minty), chocolate (and I was a serious chocoholic) and vegetables, particularly tomatoes (which was awkward because I am a vegetarian). I changed my toothpaste to a fennel based paste (available online) and then found that food had stopped interesting me. I ate because I had to - but I was rarely hungry and could only eat very small portions. The result was I lost 4kg, dropped 2 dress sizes and had to replace most of my wardrobe.

I also had mouth ulcers, coughing at night and pain on peeing. As separate symptoms they mean nothing, but apparently if you put them together the cause could be neutrophilia which I was told is the of low white blood cell count. So perhaps you should consult  someone in your care regime to have a look at your WBC and see if is this that is causing your severe side-effects.

Although my consultant was reducing my dosage, in February 2016 I was taken off Capecitabine because of consistant very poor blood results, and was transferred to a hormone treatment to control the oestrogen.

However, my appetite has never fully recovered and I have never regained any weight. And the weirdest thing was that whilst taking it, my nails were in perfect condtion, but in the last 18 months they are splitting, breaking and severely damaged. Everyone says it was the chemo - but I don't believe them. However, it must take quite a while for the drug to clear your system and also having IV probably doesn't help.

I assume you have told your Oncologist/Nurse Specialist or GP that you have stopped taking the medication. If so, what advice did they give you?

Hope this helps, and I am sure you will get lots of other people replying to you who will/may have further experience and advice.

Hi Mandy,

Just following on from your comments above. What were your symptoms for the chemo toxicity? I seem to be getting more and more but don't know if its severe or not.

I do have an appointment with my oncologist tomorrow so will obviously discuss this with her as well. Is your alternative chemo in tablet form as well and what is it called.

Keep strong

Josie x

Hi Wheelie, 

Following this with interest as due to start the same tablet form chemo tomorrow. I too have had BC now mets in bones, lymph nodes, lungs and liver. Think the only place I haven't got it is my big toe!! 

Can't offer any advice but it worries me that it has affected your eating and drinking as I can't afford to lose any weight as being a 6ft woman and weighing 63kgs already been told I'm too thin! 

Hope you get it sorted xx

Hi Josie

In answer to your question this sounds scary but I had very bad mouth ulcers, an ulcerated throat which prevented me from eating or drinking. I had also lost over a stone in weight during that time. I also had extreme bowel problems and I was rushing to the toilet every 15 minutes and was passing bloody motions. This was accompanied by severe stomach cramps. I was later diagnosed with diverticulitis. My lower lip had broken down and the top one was following. I had a high temperature and was severely dehydrated. After I had rung my emergency chemo number they advised me to call 999 and I was in hospital within 30 minutes.

After being seen by a Dr and having had numerous tests done I was admitted. I ended up being in hospital for a week.

This all happened after I had been seen by my trial oncologist the day before. She did not seem concerned about my condition but when I saw her just over a week later she took me off the trial.

I then ended up back in hospital 12 days later with c-diff which was caused by the cocktail of antibiotics they had given me on the previous admission. I now can’t have certain antibiotics or painkillers.

I also ended up back in hospital 3 weeks after that with similar issues but now I know what I have I just steer clear of certain foods.

Once I was over all this (my new oncologist at my original; hospital was very understanding) he agreed to try a different chemo and I ended up having carboplatin which was given via a drip. I have responded really well to this and I am due to have surgery to remove what is remaining of my tumours next month.

I hope that helps. If you are at all concerned speak to your oncologist or breast care nurses.

You stay strong too.

Mandy

Hi, you must go into to taking this with an open mind, it's horrendous to hear of the debilitating side effects they have on people who are already suffering, there are many including me where this chemo has been the best I've taken, and I've had a few,  all I have is a very dry mouth, be strong, stay positive and you could be lucky!

Hi Mandy,

Bloody hell you sure went through the wringer! Big hugs for surviving all that xx.

I am concerned as I am starting to get some of those symptoms. Certainly the severe stomach cramps and bloody motions along with a bad cold sore and a very dry mouth. So dry that my teeth sometimes get stuck to my lips, especially overnight when I'm breathing through my mouth!. I haven't lost any weight, but then I am still eating although not as much as I used to, but eating anything and everything, despite whether it is good for me or not.

I'm seeing my onc today and I'm certainly going to raise some of these issues. I really didn't want to go back to iv, but it maybe the way forward. Anyway I've lots to discuss with her.

Thanks for being so open about your experience, after all there's no reason to sugar coat things. What you have said is not scary but has certainly given me food for thought.

Josie xxx

I'm sorry to hear you are having a rough old time with capecitabine.  I too am on it, being the 3rd chemo since last Oct as the previous ones didn't work for me. 

I am not feeling many side effects at all. I have the odd funny tum, and at one point my feet were very sore ( as if I'd partied all night in a killer pair of heels).  My taste buds have changed slightly .. not so fussed for the sweet stuff now.. more a savoury trend but that's it!  I did read all the side effects of capecitabine and groaned inwardly as the paclitaxel and EC I was on previously was horrendous for me but can honestly say it's been kind to me thus far.  I have a scan at end of month to see whether it is working so I have everything crossed.. 3rd time lucky and all that...

Wish you well.  Hope it can be adjusted to make it more comfortable for you. 

Julie x 

Hi just reading your posts on capecitibine seems I am fated not to get total 14 day session had three goes at 1800 tabs and each time something crops up I end up in hospital for breathing probs and only get 7 days in so still not sure that it will work . But last chance saloon really. Having permanent drain in next week so fingers crossed it will help, oncologist said that I shouldn't lose more weight but appetite it ifffy. 

Got very low cos I felt that I am not living with cancer but it is ruling me and that's not what she be . Poor hubby stressed to eyeballs what to do? Big hug to all and we can beat it with hope and love

Thanks again for listening. Xxx