Hello Wellmeant, you’re very welcome on here. - just to say that I had similar to your wife - 6xEC, then Taxol (on a clinical trial) which didn’t work for me, but… I’ll have been 2 years on Xeloda in January. It does have side effects - decorating the tree yesterday, not so easy with blistered fingers… and I’m hoping for good blood results tomorrow.
And hi to other capecitabiners - “I’m dreaming of a peachy Christmas”
For those of you who have been on Xeloda for a long time, how do you cope with the tiredness and does it plateau? I am getting so tired, it is hard to summon up enthusiasm for Christmas preparations, let alone do them.
I am concerned that it will just get worse and worse.
Ann x
Wellmeant - your wife has been through a lot of treatment, no wonder she is tired. I often wonder how much tiredness is related to cumulative effect of previous treatments.
mrsblue - good luck with the bloods tomorrow. My hands sometimes sore but at least I don’t have blisters.
Ann - I’m not as tired since I had my dose reduced a few weeks ago so that might work for you too.
Have been having a bit of a panic as have developed a rash this week. It’s now over most of chest area, upper thigh and inside of both elbows. Was initially worried skin mets were growing again but it’s now so widespread I don’t think it would have grown so quickly as even before starting Xeloda they didn’t develop that fast and skin are much bigger than rash. I know the chemo can cause rashes but does seem a bit weird that it would start up almost 6 months in. Feel well otherwise so don’t think it’s an infection.
Hope rash went away gail5. Did you see your oncologist?
Xelloda cycle no7 here
x
Hi valkeh - rash seems a bit better. Spoke to chemo unit and they checked with onc. General consensus was it’s an allergy. Saw GP yesterday who prescribed some Canesten cream as I have an area of broken skin under breast that won’t heal and he reckoned it was possibly a fungal infection. I’m slightly ahead of you as I’m on cycle 8.
Hi everybody , I just wondered how often everyone has scans etc, how often do you have ct scans , chest x rays and bone scans ?
Thanks
louise
Louise - I had a scan in July for baseline at start of Cap and in September but none since. As only skin mets have shown up so far (plus whatever is still in the breast after chemo and rads) my onc doesn’t think it’s worth doing frequent scans.
Just a quick note to offer hope - after 8 cycles of cap, scans show my bone mets are stable. Onc has given me a chemo holiday & put me on tamoxifen. Can feel my blood counts slowly returning to normal & I can stay up past 9pm.
keep attacking ladies!
Thank you!
Hi Mildred
Don’t know what happened there, the website must have thrown a wobbler! I’ve deleted all your duplicate posts.
Kind regards,
Jo, Facilitator
Great news Ingrid - hope you do well on Tamoxifen.
Have a great Xmas everyone.
Hi Ladies,
Hope everyone’s ok - I should have start my 17 cycle of cap tomorrow but have a horrible cold and high temperature. Spoke to chemo department and nurse said if you have a high temperature them its not ideal but to see GP. Seen GP today and he said only the chemo ward can decide whether or not to take chemo. i’ve already decided to have another week off as feel awful and don’t want to to take any un neccessary risks.
Off to be now have dosed myself up and hope it doesn’t last much longer than a few day, At least it’ll give my hands a chance to heal as they’re been terrible with splitting and haven’t been able to use them properly for a week.
Take care everyone and can I wish you all a very happy and healthy new year.
Love
Chris xxxx
Chris - hope you feel better soon. Probably right to take a few days off chemo.
It’s looking likely that I shall be starting capeciitabine early January (seeing oncologist on the 7th and have my capeciitabine induction on the 8th). ThQ for all your useful tips and positive attitudes. I’ll let you know how I get on. I’ve already started with the moisturising of the hands and feet!
Augusta - hope you get great results with Cap and have minimal SEs.
Mildred - I was interested to hear that you are having a break from Xeloda. Did your onc offer it or did you ask?
At my last clinic, on Christmas Eve, my onc asked, now that I have had 6 cycles, did I want any more? What sort of question is that? He said I was coping with the SEs well and that I could carry on if I chose to. I said I would, but this cycle, I feel SO tired and anxious.
It seems my options are either to carry on and feel rubbish, or stop and see what happens, which I find very scary. I have only had one CT scan since starting, which showed encouraging results, he said. I know I could ask for a reduction in dose, but not knowing how well this is working, I am not sure if I should.
Has anyone else stopped and started every few months or so?
Any thoughts?
should have read NOW taking Taxol
Yes Ann I have.
After I had my first 6 Xeloda I stopped it for 18 months. Only restarted when I began feeling less well and Tumour markers were rising quickly too. I had another 6 or 8 Xeloda and this time I managed to remain off them for 2 and a half years until again I began feeling unwell and TMs rising. I was on Xeloda again this year and had about 4 rounds but my Onclogist at the WGH and I had a chat and decided that I would switch chemos and I am not taking Taxol. Had my 4th infusion yesterday and if thie chemo does it’s job I have appointments laid out until April.
When I first started Xeloda I had a higher dose. But I was on a reduced dose after this and the drug still worked well for me. If I have mssed anything out or you have any more questions feel free to PM me ( in case I miss your post on here which is easily done when we cannot save discussions any more. Hope it goes well for you. I am surprised that they sort of left it up to you to decide. if they ask me what I want to do I usually ask the Consultant what SHE would recommend that I do next…and take it from there. Sometimes I go away and think about it/or change my mind and then I contact her via her secretary. Love Val
Well - this is probably more for new ladies than those already on peachy pills. I’m about to start cycle 6, so not that far in, but my experience to date is fantastic!! My first cycle I struggled with tiredness, had a 25% reduction for cycle 2 and haven’t looked back!
I do take vit b6 50 mg twice daily, and I let my husband indulge his newly found foot fetish by rubbing my feet with Udderley or other urea high foot creams, and I see the chiropodist routinely every 6 weeks - but that’s it!! I have - hugging a tree trunk here - no hand foot syndrome, my digestive system is fine, but what’s best, is my mental state is better than it’s been for years, I’m so much more my old bright self. Everyone I see comments on it - diabetic nurse and phlebotomist independently in same day, friends I’ve not seen for a few weeks - I even suggested to my GP he try some of his more depressed patients on Cap!!
Physically I’m not great - had 2 weeks in Madeira and did a very small amount of walking in small towns, but mainly used wheelchair, but my bone mets are extensive and it is tiring just existing so I don’t worry too much about that, just accept it and delight in my mental freshness.
I have my bone scan in 3 weeks, and pray that my bones feel as well asI do and I can carry on with this wonderful drug forever!!
Nina