Lovely to read your upbeat posy Nina and long may the peachy pils work well for you as they have for me.
I have been to Madeira a couple of times and know how steep the hills were. The first time we went we hired a car and explored the island. But they had not cnstructed the new roadway through the mountains to the other side of the island and it took hours to get there. The next time we visited they had the new motorway and what a huge difference the travelling time was improved. My husbnad as a 5 year old went to live in New Zealand. Returned to Scotland for a while they went out again to a new house in NZ. Of all the islands he visited the one he loved the best was Madeira and he wanted to return there. What a beautifu spot it was. We stayed in a small rented house at the back of a Funchal family who owned 4 houses that were originally the buildings used to make the famous Madeira wine. They had Ponsetia the red chritmas plant we have here except the were 10 feet tall. And banana and other fruits grew in their garden. We tried the cable car a few times and the views were amazing. It has its own climate in Funchal and if you go out of the city the villages are often covered in mist…a bit like the haar we have in Scotland.
I had my hair shaved off today as it was coming out in handfulls today. I tried on several wigs and my elder daughter came with me to help. So I now have more hair that I have ever had and it is so cosy to wear! The last time I had a wig was in 1989 and it was in the summer and so too hot for me. If I have any courage I will ask someone to take a photo for you to see.
I also went to the dental hospital regarding a piece of exposed bone in the top of my mouth. They were very thorough and think it is fine as it is, not infected and not causing pain but will see me again in 4 weeks time to monitor. The dentisy called in the Consultant and he got an all round xray done of my mouth and all looks fine. Sometimes we have a great NHS. First a freee wig and free shaved head…and then personal dental inspection.
Now about to have a fune eveing as Brother in law and girlfriend coming over at 7 or 8pm and staying the night. We are all going down to Peebes in the borders tomorrow. I am dripping them off at the end of a walk and they will walk back to Peebes where I will meet them in the pub where I will be drinking a soft drink and reading the paper in the warmth! I have plans to go to the butcher there to pick up some bacon and meat to put in our small freezer. It is worth it as it si so good! I wil have my wheelchair with me and if any energy will pop into the charity shop for a lookee. Wil let you know Nina if I do any “Gormless shopping”.
I know this is more like a letter but just wanted to show they newbies on here that the peachy pills have kept me going for years. I am on a new chemo ne=ow Taxol but hope to return to Xeloda again sometime. LOve to all, Val
ThQ Nina and Val for such uplifting and encouraging posts for us newbies. I hope to posting on here soon that I too am coping well on the peachy pills 
ThQ Nina and Val for such uplifting and encouraging posts for us newbies. I hope to posting on here soon that I too am coping well on the peachy pills
Ann - have you decided what you want to do?
Val - at least it’s a good time of year for hats. I didn’t mind so much not having hair this time last year as I had a good excuse to wear hats and couldn’t be bothered with the wig. Your exposed bone sounds a bit grim but at least they’re keeping an eye on it. Hope you had a good time in Peebles.
Nina - sounds like you’re doing great. Hope the bone scan confirms it’s working for you.
Augusta - hope you do well on the peachy pills. It’s not too bad for most of us.
I’ve noticed an increase in skin mets over the holiday period and have managed to bring forward my onc appt to Friday, so I may be leaving the Cap club soon.
Thanks, ladies. I had the 7th cycle but have felt SO tired this time. After reading that there is evidence (in mice) that having a chemo break helps stop resistance developing, I wonder whether to take a break. I shall discuss it with my onc on Monday. (Article on the BBC website today under Health.) Only having had one scan, after 4 cycles, I am not sure how well the drug is working (or not). It is hard to make a decision without information.
Good luck for Friday, Gail.
Ann x
Ann - can you get them to do another scan before you decide? Good luck on Monday, hope you get better advice.
Saw onc today and she also reckons there is a slight increase in skin mets. As I’ve had a reduction in dose of Cap due to low blood counts, we agreed increasing the dose again would probably be counter-productive as I’d just end up with another chemo break to bring them back up. I’m now moving on to Vinorelbine (Navelbine). My unit normally gives it by IV but she thought it would be worth trying the tablets instead for my crap veins. Only problem she said was it was harder to get the dose right with tablets as people absorb it at different levels and it’s also hard on those WBCs, but she’s starting me off on a low dose and will build it up. I also suspect they prefer IV version as it’s cheaper. Hoping to move house this year, so she will try to get me Monday/Tuesday appt dates so I feel up to house hunting at the weekends.
Good luck to everyone still on the peachy pills and hope it works for you longer.
Good luck on the Vinorelbine Gail, hope it works well for you, and good luck with the house hunting too.
Ann - I’m sure Gail is right. Another scan before you decide sounds a good idea, you need to know how we’ll it’s working.
I started my Capecitabine 2 days ago and so far so good, very early days though I know.
Sue x
hi Scottishlass and other xeloda/capecitibine women - I’ve found reading your posts incredibly helpful.
I wonder if anyone has any advice on stopping Xeloda - I’ve had 6 cycles over 18 weeks. Pet scan half way through showed effective, then latest one I’m told is ‘unclear’ - some spots stable and some with uptake of glucose but unclear why (bone healing or disease?). Onc advice is to stop for 3 months and ‘see what happens’, with pet scan then. This feels very scary. The alternative is to stay on and retake the pet scan after 3 months having been on it. Onc will go along with this if I want but not his advice. I’ve gone away for a week to decide. Partly its because it feels like another treatment not working…though I’m not told this yet. Anyone else been in this situation? I can see from posts others have been on and off Capecitibine but its always, of course, hard to compare our circumstances.
I was diagnosed with secondary bc in the bone (mainly spine) in Jan 2012. Primary was March 2009. Cancer returned through Tamoxifen. Was started on Exemestance just before cancer rediagnosed and continued on that for 4 months. Then off it as it wasn’t helping. Taxol chemo didn’t prove effective. I’m HER negative. I’m in good health - no pain relief needed. Few side effects on Capecitibine (particularly once I started moisturising, taking B6 and using other great advice on this website).
any of your experience and views welcome!
Hi bobby12 I think I am similar to you. Taxol only worked 3 months then cap pills a couple of my specs increased in size his my onc took me off if straight away. I took my flats round of cap on nov 13th , did c t scan then started epiribucin on 8th jan. my onc is very quick to change thinks if anything changes in the wrong direction, not sure if this is any help ? X
Hello Bobbie, I have stopped and started Capecitabine quite a few times but this was suggested by my Consultant. I am fortunate enought ot have tumour markers in my bloods which can suggest whether the treatment is working or not. There are several different tumour markers and some ladies have a different marker from me in their bllods. I have CEA and Ca125 in my bloods but my Consultant does not go with these blood tests on their own it is only part of a big picture and how I am feeling is also taken into consideration. I had about 6/7 cycles then a gap off themof 18 months. The next time I had 6/7 cycles and managed to keep well for 2 and a half years. The I was on the peachy pills again but had to stop them when I had to go into hosp for an operation to insert a pin into my femur but once recoverd form that op I was back pn the pills again. I had another op and the same happened again. There was one lady on here who had been constantly on Capecitabine not stop for about 8 years so you see each one of us is different and we do not all have the same type of cancer either. Hope this helps and doesn’t just add mroe confusion for you. Grt back to me if i can help later. Val
Thanks both for your responses. I’m taking a week to think about things and see the onc again in a week. Its not clear to me if I come off, and then am retested in 3 months, if the cancer has progressed, how they will tell if the capecitibine was working or not. Alternatively it could show no progression, in which case they may deduce it was working and leave me off it for a while. The onc says my particular cancer (bone mets at present) is progressing ‘slowly’ but still feels very scary to be off medication when its an unclear situation. Good luck both of you with your own situations - great to have this opportunity to share information.
<address>Hi Bobbie. I had a similar discussion with my Onc ( who is well respected and research orientated) after my 16th cycle a few weeks ago. His opinion was that in my case he felt I should continue for as long as it was working and I was coping with side effects. He said that he had not had good expriences of stopping nad then attempting to restart…but it clearly has been sucessful in some cases such as Scottishlass. I dont know if the fact that ith has never reduced my markers( but I have had nearly a year of stable MRIs) influences his decision not to stop it in my case. best wishes Pamx</address>
ps…he is never keen to swap a treatment unless it is clear it is not working ie would not stop on slowly increasing markers unless several show the same thing or in keeping with reported progression on scan. Perhaps you could get your onc to clarify his advice…if cap is not doing anything then you would expect continued progression whilst on it. If it is working then maybe he is saving it to use again?
Thanks Herbgarden. My fear is he’s stopping it because he thinks its not working but he doesn’t know that for sure yet. He did say that most people did not go back on once they stopped, which is in line with what you are saying (with Scottishlass representing the exceptions though!) I know he won’t want me on something that is possibly not working (even if I’ve low side effects, which is the case). I’m going for a second opinion asap as well as trying to get clarification. So far I’ve had progression, in the bone (mainly spine), through exemestane, docetaxel and now, (possibly) exemestane. I’m at a good London centre and have faith in the team I’m seeing, and seeking a second opinion from another good centre, who agreed with my treatment when I saw them 6 months ago but had a slightly different angle on things, which I found helpful then.
Bobbie - I think if your onc thought Cap wasn’t working he’d be looking to switch treatments and not stopping altogether. My onc (same onc as Val) mentioned switching between Cap and hormonals to give me a break from chemo when Cap got things under control, but have had to leave the Cap club before getting to that point unfortunately.
Bobbie - It is confusing when the oncs seem to have different views and ways of working. One of my tumour markers is up slightly and the onc has ordered a scan for the end of Jan, because he feels that is not sufficient evidence to change drugs. He says I should stay on Xeloda while it is working and tolerable. As you say, it would be scary to stop if you don’t know whether it has things under control or not.
Good luck with your decision.
Ann x
Hi Ann (& everybody else)
Just seen your question about break from Cap. My onc at St Barts suggested the break as she said there was no evidence that taking it continually with just bone mets had any benefit. I think if I had mets in my organs the plan would have been different. I had 2 lots of scans during my 6 months on Cap & they both showed stability so onc was happy the cancer has been knocked into submission for now. In addition she felt my body needed a rest - my blood counts were very low. I’m now on tamoxifen/zometa & will be scanned regularly. I go back onto Cap once cancer springs to life again (I was pleased to read Val’s experiences that this could be a few years away - fingers crossed).
Ingrid
Thanks, Ingrid. Mine is in the liver as well as bones and lymph nodes.
Ann x
Thanks to everyone for their comments. Today’s appointment gave me a different view - the team thought I should maybe stay on Cap. for another couple of cycles and test again as the results were’nt clear. It was a difficult call for them and a reminder how unclear reading bone scans has been all along. So that’s what I’m doing for now. Also made more clear to me that plenty more treatments are still possible for me despite 2 chemos on the secondary so far and one combination when I had primary in 2009. So am a bit clearer and a lot less anxious. Good luck to everyone…x
Hi Everyone. I haven’t posted for a long time as find the site just too confusing to use.
Anyway, just to say hope every one is well. I thought you might like to know I had 25 cycles of Xeloda then had a 7 week break for a much deserved holiday…at my oncs suggestion due to the burning hands. Bloods have always been normal. While on holiday, i picked up a water / kidney infection and have felt yuk for the last few weeks, although my GP can’t find anything wrong. Admittedly I’ve been lucky in that I’ve had almost no side effects from xeloda previously and have felt very well throughout until I restarted on It. I’m now on my 27th cycle and have had mainly stomach problems, e.g. megga wind, stomach noises, looseness and a build up of fluid (ascites) so using ferusomide and of course the hot hands are back. Lfts are a bit raised but my onc is not unduly worried. An ultra sound revealed a small amount of fluid.
The question is has anyone else had a longish break, if so for how long and when restarting experienced a different set of problems…I think the break was probably not worth the effort lol…
My favourite tip for dry skin is calmurid cream free from your GP, and reflexology sessions / massage using bio oil. Ask your McMillian nurse or hospice to organise this. It’s a free service in North Tyneside and I have to say fab. Not sure about the rest of the country though.
Yes my nails did part company but only for a short time…they seemed to buckle up then peel off. Although very uncomfortable, I kept them as short as possible and massaged them with bio oil and olive oil several times a day. Try to keep them out of water too.
best of luck to all Jane xx