Faslodex / Xeloda / Ribociclib with Letrozole

FYONA1

Hi@kattykit I will send you private messages if you don't mind thankyou

FYONA1

Hi@tilly45 I sent you a private message thankyou

Kattykit

Hi, has anyone on the  Ribociclib/letrozole combination experienced loss of appetite, I can barely force myself to eat one meal a day.

sunandsaltwater

Hi All If it's any help, I did well with palbociclib (same drug as ribociclib, a cdk inhibitor) plus Faslodex for 24 cycles. Now it is losing effect, so just yesterday I began cycle 1 of Xeloda. My oncologist said Xeloda could work 'for up to 6 months'. Has anyone here been using it for longer than 6 months (I ask hopefully)?
I've been successfully putting off chemotherapy for 3 years already, so I shouldn't be still expecting more more more time, but there you go. I'm only human! And still living alone very well and living almost the same active life as always. Except the fatigue has slowed me down a lot lately. I keep losing my phone and keys and water bottle, and try to pace my days so I can still do something really active or pleasurable every day. I'm 66. I've been lucky so far with side effects of all the millions of treatments eg Surgeries, chemo then radiotherapy in 2012. Then different hormones until I went to Macau to get the magic palbociclib in 2016.
My hair did thin out but noone else seemed to notice, then it stopped thinning after about 20 months of palbociclib.
I have anxiety but also a great psychologist provided by my cancer clinic - for free. Aren't we lucky to have Medicare !?
And aren't we lucky to have this online community too.
Hi @wendy55 after I've had 2 years off this site (but in touch with BCNA people) how're you doing now?

wendy55

Hi @sunandsaltwater, nice to see you back, I had wondered how you were and how you were doing on the palbo combo,
so you have had 2 years, thats fantastic,so now its time for xeloda, well I can say I have been on xeloda for 28 months!,
and there is another lady here who has been on it for 5 years!, although like you the xeloda is not working quite as well as it did initially and my markers are rising slowly,I have scans on July 21st then the results on the 26th, xeloda is doable, it takes a while to adjust to the side effects but I learned to live with and manage them, you may not have any at all.
As you have experienced fatigue, being on xeloda wont change that, I am on a 12 days on 9 days off regime, that is what suits me, some are on 14 days on and 7 days off and then some 7 days on and 7 days off,like you I too have bouts of anxiety so have been seeing a pyschologist as well and am also on an antidepressant, my happy pills I call them,I have slowed down as well and enjoy my days now in the slow lane.
Life goes on,my oncologist has discussed several options for me when I need to change drugs and like you as well am not looking forward to have having iv chemo, BUT we do what we have to do, I have my beautiful new rescue dog laying beside me as I type this and then I have an appointment with an exercise physiologist,so all is good, be better when they find a cure for this rotten disease!!! keep in touch and when you start xeloda let me know how you are going, I have lots of tips and tricks for some of the side effects.
Once again, lovely to hear from you and how is the swimming going?
Wendy55 

sunandsaltwater

Thank you @wendy55! What a relief for me to hear you've had such a long time with Xeloda. And to know you are there to compare notes with me about side effects. I'm sorry that you are now having to talk about a switch to iv treatment. But happy you have a new dog to look after you (!)  and are enjoying all the activities available.
 It's only Day 3 today for me on Xeloda, so nothing to report! I'm on 14 days on, 7 days off regime. 
I'll be interested to hear what your options are for your next treatment.

My first question is: can Xeloda be taken WITH food? All the instructions I've seen say 'within 30 mins. AFTER eating' but I'd remember it a lot easier if I could take the 3 big pills while I'm eating, rather than afterwards. Thanks again

@Kattykit, funny isn't it - I had an increased appetite with the palbociclib plus Faslodex treatment! I'm sorry to hear you are experiencing the opposite.

wendy55

Hi @sunandsaltwater, I take my xeloda tablets immediately after eating breakfast and tea at night,and have done this since the beginning, its so much easier that way,just a quick heads up, carry a packet of gastro stop with you, also a packet of chemists own brand of tablets for stomach ache and pain, the one side effect, which, if you get it will be around day 10 and could include a few trips to the toilet and you could also get some belly pain and maybe a little wind!!! and cramping, also please keep up with moisturizing your hands and feet,unfortunately some people will get what is known as hand and foot syndrome, your hands could become  red and start to peel and also your feet, if this does happen please let your oncologist know,the doseage can be tweaked, I started on 14 and 7 but had to reduce to 12 and 9 also what doseage are you on? I only take 2 pills morning and night, this is what we found suited me, its all about balance and takes a little time to work out what will suit you and your body, its a bit scary at first as you dont quite know what to expect on a day to day basis, but it is doable -xeloda is also a drug that can allow you to have little breaks as well if you have something special coming up in the future,as far as my next treatment, my oncologist had hope for special grounds for me to take palbo or riblociclib,I will know more when I see him on the 26th after my next scans, also he had mentioned a drug called vinoralbine, but will definately know more at the end of the month - immunotherapy seems to be the latest thing everyone is talking about, so will have to do some more research about that, anyway will keep plugging away on my xeloda, it really is a great drug,I had 6 tumours in my liver, I now only have 2, and the ones in my spine have been very stable for a long time now.
Take care look after yourself,
wendy55, 

sunandsaltwater

Hi @wendy55 Thanks for the Gastro Stop reminder, the nurse told me to get some but I'd forgotten. I'll get some tomorrow.
And I'll get some Moo Goo Udder Cream, someone said it's a good moisturiser. But maybe my usual Sorbolene will do...any thoughts on best moisturisers specially for the feet?
I take Xeloda dosage of 3 X 500g pills twice daily. So six a day, 14 days on, 7 days off. My onco says if that's tolerated, I'll add another pill per day. But you'd think that less would be better....
 I'll need a blood test every 3 weeks, do you also?
Yes, I'll also have the pills straight after eating morning and night, too.
I wonder why I was told Xeloda would only work 'for up to 6 months'. Maybe because I've had a lot of other treatments already. I wonder if I could go back to the palbociclib in the future also. I'll ask. 
My mets are in my liver, there were 2 tumours 2 years ago, but now there are 3 and the first 2 are bigger. My marker nos. went from 930 two years ago, down to 47 on the palbociclib, then crept up to 112 since January. I've got a feeling I could have stayed on the palbociclib for a couple more months. But I guess I have to trust the onco.
thanks for the encouragement. I'll let you know when side effects kick in. Keep in touch anyway.

wendy55

Hi @sunandsaltwater, yes its interesting you were told that xeloda would only work for 6 months, I really cannot quite work out how they manage to come up with these figures,perhaps its just a way of saying dont get your hopes up too much, personally I think its wrong, they could just say well, we will see how we go, as I said I have had 28 months out of a xeloda and another lady here has been on it for five years, after chemo I went on to Femara for about 6 months, then  exemestane and everolimus combo for two years and then exeloda, I have scans on Thursday this week and then the results on the 26th July, my markers at their lowest went down to 13!!! they are now creeping up in the low 40s and I know that my oncologist will be looking at other treatments for me.
Yes, I do have a blodd test every 19 days, its a complete blood evaluation plus my cancer markers, its a way of keeping an eye on my liver and kidney function as well as everything else, I feel very safe and secure knowing that I am being looked after so well, it would be interesting to see if you could go back on the palbo again after xeloda, 
any cream is okay for feet and I have tried everything, I find that I have to wear socks and flat comfy shoes, I also use Dermaveen Bath and Shower Oil,.with oatmeal, its great and then put some cream on my hands and feet, see how you go, we are all different and you not have any side effects, let me know how you go,
wendy55