Just wanted to ask if anyone thats on Capecitabine or had it in the past has had breaks either a week cause they have had a cold or a couple of months?
Did you worry that it would effect the efficency of your treatment?
Had you already had shrinkage or the tumors had stopped growing?
I have a rotten cold and know I need to leave it a week or so before I continue
But I had a scan a couple of months ago which showed the tumors had stopped growing but I was really disapointed that there wasn’t any shrinkage so I deceided to continue for another 4 sessions.
My attitude is just to keep going but now I am having second thoughts that that might not be the best option, so I thought I would ask the question?..
Not so much what to do but what have been the experiences out there.
Up until now I have been really really well so I am definatly having a ‘bloke with the flu moment’.
I was on Capecitabine for 6 months earlier this year, my liver tumours stabilised and shrank a bit. Bone mets stabilised. My onc advised a break over the summer with a view to resuming in September, which I did. He seemed to think it best to take a break while things going well.
Having said that I felt very grim over the summer (nausea) and it turns out following an MRI scan I have further mets, but I am pretty sure that spread was already underway and would have happened even continuing Capecitabine. It is a difficult call.
Hi Bikingirl
I was on capecitabine 2300 twice a day for 2 years. I had really good shrinkage in first 12 months and then growths just stayed the same so I then went on 2 wks on 2 wks off. I have always been able to tell when I have new clusters onc says my liver is a bit like blue cheese(nice). I am also having a chemo break at the moment but I know it wont be long before I go back on taxol. Once I start feeling grim as Lottie said thats when I know they are too big to handle.
Good luck.
You know what my feelings are - hope you got to see Dr D and that he was able to help.
Forgot to tell you yesterday that the last time I did have a cold I didn’t stop my chemo but it does deplete your bloods a bit more I think because our immune system is already compromised.
I’ve been on capecitabine for nearly two years now and while I don’t think it has shrunk my tumours very much (if at all), two years stable is not bad. I know it is hard when you read other success stories but for some of us, I think stable is as good as it gets. So if it were me, I would keep going. Hope your cold is on the mend.
I started xeloda on 2000mg twice per day which landed me up in hospital with no white blood cells to fight infection at that time I was off it for 3 weeks but still had a 46% shrinkage. They then lowered my dose to 1000mg twice per day for the next cycle which I was fine on so they put it up to 1300mg twice per day which I wasn’t fine on and needed a blood transfusion and although they gave me this they decided for me to go away on holiday without taking the xeloda I should be taking and start it again on my return in total i was about 9 days late with my 4th cycle. They have now changed my dose to 1150mg twice per day.
My view is that everybody is different and once they get the dose right this could be a could chemo, I have ertainly noticed the lymph node in my neck and the lump in my chest wall go down considerably. At my last scan there was no shrinkage but no growth either, so I’m pleased as long as it doesn’t grow I’m happy long may it continue.
In a nutshell I have been told that a little break won’t make any difference to the overall effect of the treatment, everybody has a break at one time or another whether it’s due to being ill or to your bloods not being right.
I’ve had my oral Capectabine (Xeloda) suspended by local oncologist several times because of low platelets.
The ironic thing is, when I finally come up to an acceptable level and get a new prescription, my platelets go up to normal levels. I’m convinced the reason is that chemotherapy has a beneficial effect upon my bone marrow inflitration problem and platelets are made in the bone marrow.
Not getting liver ultrasounds or CT scans even though I’ve ponted out I haven’t had either recently. I think local oncologist would rather be spending his budget on primary breast cancer patients rather than the likes of me. He has twice got others to give me a “quality of life versus quantity of life” speech with the suggestion I give up on the chemo. I’m getting few side effects from Xeloda and am not ready to die just yet!
Think it might be time for I visited the Royal Marsden to discuss this failure of my local hospital to monitor and the bullying I’m getting. I don’t go very often to the Royal Marsden; just when I’m unhappy with my local hospital and need some advice and / back up.
It is 4 years since I got my secondaries diagnosis, but haven’t had bone mets / bone marrow infiltration thoughout… Even so, I understand from one of the receptionists at my local hospital, that I’m probably the longest surviving patient with secondary breast cancer, so that would be consistent with the statistic someone gave about only a small percentage survive 5 years.
An elderly lady who used to live two doors away from my house, got the same “quality of life versus quantity of life” speech and did what was expected of her. Her widower knows I’ve not accepted the advice and perhaps now thinks his wife might have lived a little longer?
You keep going! I love seeing your posts and hearing how you are doing…If they are trying to get people to give up on the treatments its really not suprising that you are the longest surviving patient out there at your hospital. There is a nasty attitude out there in parts of the medical establishment that is about utilitarianism,…its the same attitude which set up nICE and says someones life is worth only x thousand per year, not apenny more,
It will be failure of the chemotherapy that gets me to stop,…nothing else. I have thought it through now and it makes sense as my family is better off financially as long as i am alive and I can put up with alot to stay with them.
Glad to see you still nipping in here every now and then Holey.
I find it very strange that you do not get regular CT or ultrasounds for liver mets. My understanding is that this is the standard way of monitoring soft tissue mets. I have had one every three months for over three years now.
My oncologist and I have decided that I won’t have the 3 monthly CT scans now (which I was having for over 2 years) because she feels my liver is much improved now from what it was. I have my 3 weekly blood tests (as I’m still on chemo) which includes my liver function tests so that hopefully will pick up anything untoward plus I keep an eye on them as well!
My Alk Phos has always been high and it’s about separating what is bony involvement or liver involvement but I usually know when I’m not firing on all cylinders!
Bikinigirl I have had breaks from chemo a week or two at the most my onc looks at results to check everything is stable.
Holey you keep going as long as is necessary, tell them you want a sash for being longest surviving patient its something to be celebrated. I didnt realise you could go the Royal Marsden aswell as your local hospital does this have to be a private appt.
I’ve just had a similar discussion on Friday with my onc who stated that regular scans are 1) a waste of money and 2) upsetting!!
I was at the Marsden a few weeks back for a second opinion (Belinda - there are referral details on their website) and they clearly stated that regular screening was essential to monitor response now that I am on herceptin only after finishing taxol in Feb.
I only got scans a few weeks back because I requested them and the head scan identified that I now have brain mets!
My onc got really defensive about the whole thing and asked if I thought that regular scans meant getting them daily! Extreme or what?
I’m now going to get back to the Marsden to highlight this “difference in opinion” especially as the BCN I saw a few days after being there suggested that the Marsden don’t know what they are talking about…
Personally I think it is al ot more stressful to get a scan when “necessary” rather than making this a regular event.
Budget issues or what? Got to watch the pennies by cutting back on scans and not funding new drugs for cancer patients. How else can the NHS afford to spend £400k on a yacht for unemployed teenagers, £7k a week for A&E taxis for drug overdosers and alcoholics (trust me, I used to work in the local A&E), or methadone for drug addicts?
Hi - I am a Marsden patient. From experience (both me and others) it seams like three monthly scans are about the norm. Yes it’s stressful waiting for results (have some due tomorrow) but at least I know if there are any changes they’ll be picked up in good time.
