I posted an update from my onc review on the thread under treatments and medical issues. I am basically stable, the skin mets don’t seem to be any worse since I started on Cap. There’s no obvious improvement either but she said it was slow working, so she’s pleased that it’s stopped the lesions in their tracks so far, as they were growing really fast before I started chemo.
My onc says she has patients who’ve been on it for years, but she did tell me as I’m ER+ that once things are more under control she could switch me to a hormone therapy for a bit to give me a break.
Lesley, I’ve heard from others that oncs seem to differ about whether to keep you on it indefinitely, but if it’s working for you and SEs are minimal I think you should be able to stay on it. Are you being treated on NHS or privately. i just wondered as I’m being treated on NHS but have private health cover through work and they give me some money instead. I was told they would only cover Cap for 1 year normally, so could your review be related to that? Otherwise at least the other onc isn’t saying you would definitely come off it, so may be happy to continue if it’s doing the job.
Hi Gail, no I’m NHS treated - I think it was more of a medical issue than finanical - I think they worry about kidney damage etc, but as long as my bloods are looking good I think I should be allowed to stay on it. Marilyn, I have already quoted your long-term status on these tablets and they were gobsmacked, haha!
I’ve been on Xeloda since December '11 and have had two reduction so far due to se effects mainly hands/feet. I’m just about to start 1500 twice a day. My oncoligst said that she has lots of younger ladies on this chemo and some of them have been on it for years. Which is great news she said I can be on this chemo as long as it last or until I can’t cope with the se.
I think the secret is getting the dose right for YOU. I started with a high dose and I had awful feet and not so bad hands. I felt I was walking on broken glass after about 4 cycles. But it reduced my tumour markers by half after the very first cycle which made me want to continue. Some peope do not get sore hands and feet at all. Some peope are more sensitive to the drug.
The answer to your question about stopping or remaining on it all the time is…both can happen. Many years ago I had the first 6 ot 7 cycles than had a break of 18 months or so. Then my tumour markers had begun to creep up again and also I wasn’t feeling too good. So then I was back on Xeloda again but started with the reduced dose I had finished on the last lot. I remained on this for about 8 months and again it reduced the markers by half after the first dose, then continued to work. The feet were much better this time but had to keep slathering on the cream. Udderly Smooth Cream containing Urea (some don’t) worked best for me. Then I stopped it again to give my body a break and this time the break without Xeloda was fot about 2 and a half years.
By the time I had stated the chemo fr the 3rd time my markers has soared to 3000 ( there are different markers that people have. Mine are CEA and Ca125). These markers should not be the complete pointer towards starting again and my Consultant doesn’t like to look at them too much as they can be raised for all sorts of reasons. But when having chemo they are very useful to see the “trend” and to see if the treatment is doing its job. Out of chemo she prefers to take in how I am feelng as I am a good judge myself of where I am most of the time. My husband also can see the signs, often beore I do!
This third lot of chemo I completed 8 cycles and was scedualled to have another 4 cycles at least. But I unexpectedly needed to have a complete hip replacement which was carried out 8 days ago. Even this op had to be postpobed for a week as I only finished the pills on the Tuedsay and the surgeon was ready to carry out the op that Friday but my Oncologist said NO as my bloods had not had time to recover. So op was delayed for a week. I needed 2 units of blood at the beginning of this week when in hospital as HB had dropped to 7 but blood transfusion raised it to 10.1. I got home on Wednesday, quite early but I knew I would do better at home and besides I had married a nurse so he was able to help me. In fact better than some of the hosp nurses at times! And i could swear at him without being rude!
When I first had Xeloda I did not know anyone who had been on it. I met Dawn through this site and we were abe to compare notes as I did not know anyone with bone mets. When you are first diagnosed with BC there is lots of info but at that time there was no BCC help avaiable to me.
I did ALL the wrong things when I first started Xeloda. I do not know what I was told was 100% accurate so do not rely on my experience alone. But this is waht I did “wrong”. It was December and as my feet were so sore on the soles I bought those slippers like boots as the soles were comfy. This kept my feet warm. I read that you should keep the feet aired so I now wear crocs. I rubbed in all sorts of cream into my feet. But I massaged and massaged the cream in and I read that this bursts the cappilleries in the blood and that was making my feet worse. (Remember I am not sure if this is 100% accurate). I started puting on the cream, rubbing it gently but not massaging them, then letting it soak in, and when I put the cream on a bedtime I would put on light cotton socks to allow the cream to absorb overnight and it also helped to keep the bed linen clean. So cool feet, lots of cream, do not overwork cream and Udderly Smooth Cream with UREA from internet worked best for me and felt lovely too. Other creams if you run out are fine. Nivea in a tub (which is thicker) was good but any cream is better than none at all. Your GP can give you creams for free but not the Udderly one.
If I have missed anything please ask away. Love to all and hope this helps someone who is having treatment or about to start. I have not been sick at all with Xeloda. Love to all Val
But I found this chemo much easer to tolerate once we got the right dosage for ME. Everyone is different. My appetite is affected but I only good “good” food and by that I mean home made soups, lovely fruits, tasty cheese. But my tastebuds were affected too so things now seem more salty than before and bacon is the worst. I have just had my second breakfast and my OH made sweetcorn fritters wheich are nutrious as well as tasty. I have lost weight without trying to do so but feel al the better for it. At my heaviest in the past 5 years I was 12 and a half stone and now I am 10 stone 2/4 or 6! But n diet at all involved and it has all happened very slowly. This is the icing on the cake for me as now I feel good in clothes again where before I felt frumpy and overweight. I had to donate loads of stuff to the charity shops BUT I had to buy new things that fitted! I had an op done last Sept and I had lost weight by then but I was 10st 12 in Sept 2011. Why I am telling you this is because it helped me having my complete hip replacement but also helped with how I felt about myself as sometimes we get “lost” when we are having cancer treatment.
I have had bone mets for 13 years now. ( For anyone new who doesn’t know me) and BC since 1989 when i was just 39. There were no sites like this to bounce off, ask questions, compare notes or sceam!
Interesting reading these Xeloda threads. I’m about to start, once I’ve got my pain rads out of the way - please appointment, come thru - I need you!! - but have been I can continue tamoxifen ‘if I want to’. It seems most ladies have come off hormones prior to Xeloda? My onc says it not working any more, but the bone scan was stable - her concern is red blood cell count coming down which is bone marrow not doing its job therefore Xeloda? Taking tamoxifen doesn’t really bother me - few flushes but not much else - I’m inclined to carry on despite her diffidence - the mroe the merrier as far as I’m concerned!!
Nina
Hi I was on tamoxifen for nearly 4 years before I had a reoccurrence, I was told by my onc to come off it once I started taxol. I am now on xeloda , not really sure whether you should be on both or notindividually find that my onc tells me to do do something and then I do my research and find out why, not sure how relevant it is but I understand cancer that thrives on hormones eg taking a drug liketamoxifen will stop it fast moving as it is a hormome stopper , do if you have a chemo which is killing fast moving cells you don’t want to mix the two as the hormone plus cells will not be moving fast as you ate taking a hormone blocker, do in effect the chemo won’t be as effective, but I don’t know how true that is, I have just had an injection in my stomach to close my ovaries down but I think that is more for heavy periods , let me know how you get on.
Val - Hope you’re recovering well from your op. Were you on anything else when you had your breaks?
Nina - My onc took me off Tamoxifen before I started on Cap as she didn’t think it was working for me but also they don’t usually like you to take both at the same time. I thought it made sense to hit it with as much as you could, but apparently they can work against each other so maybe that’s where Pinkylou’s explanation comes into it. I think they also like to keep the hormonal treatments in reserve to give you a break from chemo.
Pinkylou, I think you’re right, as chemo works on rapidly dividing cells. Having said that I believe the Xeloda Queen has been taking both for many years, and it seems to have worked for her - but then the only reliable thing you can say about cancer is that it’s predictably unpredictable.
Hi Ann the only problem I had on Xeloda is lack of appitite so I found eating out had to like a Chinese meal where i could have as little or as much as I liked ( leaving my other half to scoff the lot!). I also got very tired but I stil got out and about and went on holiday but preferred to stay in the UK when on my chemo. But I do find Xeloda an easier to cope with chemo with less side effects than most. Just listen to your body and rest when it is telling you to! If you want any hlp tips or have further questions just ask. There are other threads ongoing that are to do with capecitabine/Xeloda. Val
Thanks, ladies. I have no appetite but thought it may just be the worry. Nothing seems to have any taste and my stomach seems to close up at mealtimes. Every mouthful is a real effort. Does this continue/get worse? I have just finished the first cycle.
I also asked on the other thread whether you would avoid uncooked foods such as salads, prepared fruit, etc when eating away from home.
I struggled with appetite initially but am finding it a bit better now. Breakfast is usually the hardest meal to get through for me. I am on Omeprazole which helped a bit, but my chemo ward got me to change the time I take it to last thing at night and first thing in the morning and for some reason this seems to work for me.
I am on my week off and found it a little easier to eat. I shall see if the problem comes back with the next cycle. I am not sure whether a lot of it is psychological due to the stress of the situation.
Is Omeprazole for nausea and sickness? I have several different ones but not that.
Ann I think you’re right that sometimes lack of appetite is psychological, especially when you know you have to eat to take the pills. I take Omeprazole for acid reflux.
Hi Ann , I am on cycle three , 2nd week , I have had 2 chest x rays and things are stable slightly better , I have another appt on oct 1st oct , I have a reoccurrence in my arm it and I can feel that that seems to be getting bigger , but I will find put soon about that , how are you ?