Hi Debbie,
I have just finished my first 2 weeks of cap and s/e’s started about day 7, mainly extreme tiredness, then sore throat, cough and cold and I have still got cold now. Although I wonder if this is has all come from a virus I may have caught. My feet are sore today but I am now on my week off so hopefully my feet will have time to recover. No diarrhoea or sickness but I have been careful to take tablets straight after a meal and I think this has helped. I have been keeping s/e diary which I think is very useful.
Hi Mildred1602 - I get travel insurance through MIA online, Although I went to usa in April and didnt bother with insurance as it was all very last minute!! Thank goodness I was fine and I wasnt on chemo at the time. I just make sure I take anti biotics with me and pain killers, anti sickness and upset tummy tabs and enough money for quick flight home!! lol, prob not the best idea but I am living in the moment and taking every opportunity that comes my way! Mia online are good they covered me for a trip to Asia and Australia 3years ago.
Hi everyone thanks for your info and help. Going for radiotherapy planning next week so should find out more then.
I have been taking this for 12 months now, for the first few months I did 2 weeks on and 1 off but I had a few problems and I now have 2 weeks on and 2 weeks off and it still seems to be doing the trick. I have just come back from a holiday in Mallorca and got insurance through MIA they would only cover for Europe excluding Greece for some reason and I had to have proof from my oncologist that I was fit to travel, it cost £56.
Just wondered has anyone coloured their hair while taking this, mine has thinned very slightly, think its only me that notices and seems to have got grayer lately. Not that important I know but just thought I would ask.
Hi Janice,
I have had my hair coloured at a salon using an organic colour Schwarzkopf ‘Essensity’, 90% organic ingredients. I have only just started cap and having it coloured again tomorrow so will let you know if I have any problems but my hairdresser says it is fine to use during tablet chemo, she has had chemo herself so she should know!! So fingers crossed.
Having lost my hair twice through previous chemos, my hair feels very important to me now, it helps me feel more normal and although I havent got much hair, it makes me happy when my hair looks good
Evening lovely Xeloda princesses
I wouldn’t normally post on this thread not having had chemo myself (mx, rads and letrozole, now abandoned but that’s another story) but I’m taking my 87 year old mother to her cap consent clinic tomorrow so I was wondering if I could join this thead as proxy. I can’t do much practically to help her as I live a distance away and have other not BC related health issues at the moment, but I was wondering what if anything I could do best to support her. She has regional recurrances in her axila and collar bone, and possible lung mets following a grade 3 DX, mx and clearance two years ago. She’s ER neg but HER positive. She was offered 18 weekly cycles of Tax but her BCN and I thought that was mad as she has very fragile skin, angina and digestive problems and quite frankly we don’t think she’d survive it. She will, however, be getting herceptin if her heart is otherwise OK. She has been prescribed amitriptyline for pain control for the tumours pressing on the brachial nerve, but it’s the S/Es from cap that we’ll need to deal with. I can probably manage to visit her once every two weeks, and my brother the same. Apart from that she is alone. Any advice?
xxxxx
im currently on my 6th cycle of cap. Ive had very few problems with side effects and specifically have not had probs with hair loss. I decided to risk dying my hair and have done so 3 times since on chemo. Twice during the week off and once whilst taking cap all with no probs. I use the non permanent nice and easy…it says it lasts for about 24 washes…in practice for me it acts as permanent. I think there may be individual factors involved …you may need to try it on a small area for a short period first. Best wishes Pamx
Hi Foxy
Im on my second cycle and so far few SE’s
Some bloating after meals and random diarrhoea both manageable by eating smaller meals (I get full up much more quickly) and I have Lomotil on standby though it’s not been so bad that I have to take any.
Some hard skin on my feet but have been putting on Udderly with urea in the morning and evening. I jusy use a regular moisturiser on my hands and they seem to be OK
Occasional leg cramps at night despite my blood work being OK. I just grit my teeth and get through them.
Not feeling any more tired than usual but have had a couple of stinkers of migraines which may be linked to X, hormones or brain mets who knows??? My tinnitus has got a lot worse at night so sleeping with the radio on.
Having said all that, I’m still managing to work full time
Hope things are going well for you both.
Laurie x
Hi Laurie
Thanks for the advice, I’m full of admiration that you are working full time as well and hope the Cap is working for you. This thread has been so useful as I was able to ask the right questions and clarify some things my Mum was told. She’s been given 2000mg twice daily so I guess there is some room for reduction in the dose if the SEs are bad. Then round by the chemist on the way home to get E45 as recommended by them for her hands and feet, but I might order some Udderly off Amazon and get it delivered to her. Typing this while waiting for the inevitable “can you just remind me…” phonecall!
Thanks again
xxxxx
First of all, sorry to hear your Mum is having treatment for secondaries, but welcome to you (and her) to the “capecitabine club”. I’ve been on this treatment for over 8 years, since my liver & bone met dx, but am having a few weeks break right now (nothing to do with BC or the usual SEs). Along with a bone strengthener and a hormonal treatment, it’s kept me stable and pain-free for far longer than originally thought possible. I am very lucky.
I wonder if your Mum might already be seeing a podiatrist - I was referred to our NHS podiatry service following my diabetes dx some years ago, and it’s been very helpful in managing the impact of capecitabine on my feet. I would definitely recommend that she tries to get referred either via her GP, or perhaps at her local hospice?
Which brings me to that word that sometimes makes some of us rather distressed and anxious: hospice. While all hospices are quite individual in the way they’re structured and the services & support they offer, the one consistent factor is that they’re there for us: people with life-limiting illness, especially those of us whose health and/or treatments have a major impact on our lives. I can’t speak highly enough of the wonderful support my partner and I were offered by our local hospice when I was first dx with secondaries. I was able to regularly see a doctor through their out-patients service, have some much-appreciated complementary therapies, and get support & advice from a specialist lymphoedema nurse and an occupational therapist at the hospice. And my partner was given a very sensitively provided tour of the in-patient facilities . . . to reassure her about what might be available to us “later”.
Most hospices also offer day sessions, which include a range of activities, the opportunity for private chats and other therapeutic services - and a nice lunch. This type of support is usually targetted at people living on their own coping with the impact of life-limiting illness and its treatments, and to those needing regular respite so their carers get a bit of a break. It occurs to me that your Mum might really benefit from this type of service, reducing her isolation, giving her a social outlet in a caring environment and dealing with any worries she (and you & your brother) may have as she embarks on this new treatment regime. Do please discuss it with her, and see what she thinks - I know a lot of people think hospice = death , but that’s really not the case. In fact, hospice = good quality of life , which is what we want most in our situation.
I do hope that this treatment treats your Mum kindly, and that it works as well for her as it has for many of us here on the forums - please don’t hesitate to ask any other questions you might have - so many of us now have an “A-level equivalent” in living with capecitabine!
Hello
Am now halfway through second cycle and fingers crossed no bad side effects yet. Hope you don’t mind Marilyn but was just intrigued by your last post - are you having hormone treatment alongide being on capecitabine? I’m interested because I had a variable response to an AI before starting this and we wondered about having it alongside it.
Also interested in whether people have had to fight to stay on capecitabine beyond 6-8 cycles. In my area it seems to be treated like a chemo like tax or FEC and given for a short number of cycles and then people are taken off it (esp those with liver probs). Obviously don’t know if it is working yet (!) but if it does then am greatly inspired by the lengths of time people seem to have been taking it.
Thanks
Celia
Yes, I’m on exemestane as well as capecitabine & a tablet bisphosphonate (ibandronic acid) - very unusual to get an AI at the same time as chemo. My onc wouldn’t do that now, but neither of us wants me to stop either the exemestane or the capecitabine, in case we stop the wrong one! “If it ain’t broke, don’t fix it” seems to be his mantra.
Most oncs that we hear about will prescribe either an AI or a chemo, keeping the other as another “lifeline” for if/when the current treatment ceases to be effective. I had tamoxifen for five years after my primary BC treatment (lumpectomy, CMF chemo & rads), then Arimidex when I was dx with bone & liver secondaries, changed to exemestane about 6 years ago - my BC is very ER+++.
I haven’t seen any info about the impact of being on capecitabine (or my other treatments) long-term - some of us are true “pioneers”, or “guinea-pigs” depending on your take on it. My onc has taken me off capecitabine & my bisphosphonate for a few weeks because I’ve become quite anaemic, and he thinks this is a result of my now poor kidney function - failing to excrete something vital triggering my bone marrow to make red blood cells. While the key cause of my kidney problem is diabetes, he’s concerned that these two drugs might also be having a detrimental effect on my kidneys. Isn’t it all so complicated?!?
My onc is based at the Christie Hospital in Manchester, a specialist regional cancer hospital with satellite clinics in various surrounding towns. I believe this means there is less liklihood of my being refused treatments than if I was being seen at a non-specialist hospital, but there still seem to be significant post-code lottery problems for us in accessing our treatments throughout the UK.
I am on my 7th Cap cycle and have had few problems, just rther loose bowels and a bit tire in the afternoons.
i eally only wanted to add a note to Marilyn’s comments about the Hospice - mine has been fantastic. I was referred for some advice on pain relief when I couldn’t get an app’t with the onc for 4 weeks. It has been great. I have even been having weekly acupuncture for pain and hot flushes. Don’t think if it as a place to go to die. I have made lots of friends there and we are all very much alive.
Jacqui
I can’t begin to thank you enough for all the useful advice and support. The Hospice advice is particularly useful. She has been a supporter of Marie Curie for many years (once went to Buck Palace for a volunteers’ reception nominated by them) and I think she has followed how their services have developed. Her GP practice has a Marie Curie nurse so I’ll follow it up with her and also ask about podiatry. My Mum is quite a sociable lady but lives in a small village so has to drive places, but she also has a deteriorating eye condition and I’m concerned they will take her licence away soon. This will inevitably limit her options further, although the roads of West Yorkshire may be safer as a result. She had a surreal conversation with the oncology nurse about going to her “luncheon club”, the nurse clearly thought she meant at a day centre while I knew she meant the Conservative Ladies’ Association monthly ladies-who-lunch do. So you are right, we do need to think about ensuring she has the company of people who understand and can help support her. I’m looking into Attendance Allowance under the special rules, the oncologist muttered something about her CT scan showing up small nodules in her lungs as well as the lymph nodes in her collar bone, but I peeked at her notes and it clearly said metastasised recurrent breast cancer so I’m hoping there will be no problem, then she can blow the whole lot on taxis if she wants just so long as she can keep getting out and about.
Incidentally, the oncologist said if Cap worked for her she could stay on it indefinitely. She is also being offered herceptin but they have to check her heart first and again they said that could be indefinite.
Thanks once again, this site is so good and I wish I’d found it sooner. When I was first DX I was scared to google anything in case I panicked myself and just concentrated on the BCC booklets I was given, I only found it when I googled about letrozole side effects six months down the line and I’ve learned so much, as well as being inspired by so many of the stories which people share so willingly and openly.
I’ve no doubt I’ll be back soon for more advice.
Had my results from scan last Thursday and everything remains stable yeah what great news. I was worried as I have a few period of pain and the tiredness have been a ugger. But my husband keeps telling to slow down. I’m full of admiration for you Alesta29 I don’t think I could cope with working fulltime now although i really missed my work colleague and the job itself. I decided to hang by boots up last year as it became to much for me a very personal decision as we all are so different.
Well after a bit of debate about further treatment I was given the choice of going onto my last hormone treatment as everything else has failed so it was Faslodex or to stay onn the peachy pills. I didn’t hesitate and decided not to use my last hormone treatment and if the peachy pills are work then bring it on!!!
I spoke to soon about not having diarrhea I felt awful yesterday after a great day with my sister and friends. Fell asleep all evening, becoming a bit of a habitat I’m afraid. I work up this morning with horrendous stomach cramps and had two awful bouts of diarrhea. My head feels like its about to explode, I’m drinking plenty of fluids and hoping I don’t have a return later on today.
Never mind I know its a side effect of the Xeloda but the main thing its that it working and I’ll get over the it. I hope you all have a great weekend.
Hey Chris - STABLE! Just felt the need to shout it on your behalf - so glad to hear the peachy pills seem to be working well for you, and hope the annoying side effects calm down soon. I still get “surprise digestive challenges”, even after more than 8 years on capecitabine, but it’s not a constant problem. Only very occasional, thank goodness. xx
Hi Marilf
Thanks for your response. You give me hope that I can keep working. At 48 I’m a little too young to retire & I need the money to tick somethings off my bucket list.
Ingrid
Can finally post on the new forums, haven’t been able to for weeks! Just posting to hopefully help any new Xeloda/Capecitabine ladies. I’ve been on continuous 3 weekly cycles of Capecitabine since April 2008. 2x 2000mgs daily. Have the occasional heel cracks but not much else. All this time my cancer has remained stable. My last CT, a couple of weeks ago, still shows all is stable although my tumour markers are just now beginning to slowly rise so I (may) have to change chemo in a few months time…but good luck to all, hope Capecitabine works well for you.
I’m currently waiting for a date to start this one. I was diagnosed with BC September 2011 but developed skin mets after going through chemo and rads to shrink my tumours before mx, so haven’t made it to surgery in time to prevent secondaries. I’m still catching up with the posts, but you have given me some reassurance that this one might be worth a try. I’m still thinking about whether to go back to work as I’m still 47 and need the money, but sounds like this might be a practical option.
I breezed through cycle 1 with only a bit of the big D. On day 8 of cycle 2 and am feeling a bit tired and have a blister on the ball of my foot which is breaking down a bit. One of the women on the US site said that soaking feet in epsom (or is it epson?) salts worked for her so going to give it a go!
Hello again
Am halfway through second cycle now and touch wood no real probs. Really really hope that this chemo is working …
Thanks Marilyn for the info about the AI - it’s interesting to know.
Belinda hope that your marker results are just some kind of blip and your next scan is ok.
Alesta hope that the blister disappears soon
Gail - good luck
Cx
Hello everyone
I’m now on day 7 of cycle 1 & I’m so tired. Do things get easier? I’m on 2 weeks on 1 week off taking 2500 am & pm. Does anyone have any tips? You all seem to be coping so well. Trying to find a routine so I can get little jobs done but not sure what to do for best. Was hoping to keep working but that all ended on day 3. So fed up with this bloody disease!
Ingrid
I work up this morning with horrendous stomach cramps and had two awful bouts of diarrhea. My head feels like its about to explode, I’m drinking plenty of fluids and hoping I don’t have a return later on today.