Hi AllTomorrow my oncologist wants to talk about a new drug as others not working, she has pretty much given me 2 optionsFaslodex (non PBS)Or Xeloda (which I believe is a chemo drug)There is also talk of drugs called ribociclib with LetrozoleI just like to hear your stories/ experiences with these drugs. Many thanks :)

Hi @shus - I am on the letrozole and ribociclib combo. It is working well. Very minor side effects from the ribociclib. Hot flushes and some aches and pains due to the letrozole. I'm hoping to stay on these 2 medications for as long as possible.

Hi @FYONA1,its really very early days yet in terms of your diagnosis,and I am sure you have been bombarded with lots of information!,myself I am coming up to my 5 year anniversary, and am currently on about my 4th line of treatment, so I do not fit the criteria for ribociclib/letrozole,however I have done a lot of research into it and its certainly is the way to go, in terms of advice, just take one day at a time and breathe! easy to say hard to do, if you are concerned about your hair please go to your hairdresser and have a chat with her, I go to my hairdresser every fortnight to have my hair washed and dried, mainly because I cannot do it myself due to side effects of the chemotherapy I am on at present, your hairdresser should be able to advise you and encourage you with how to look after your hair, my hair too has thinned on chemo and changes quite frequently depending on how I am feeling at the time , I still have foils every 8 weeks, however she uses a special colour with no ammonia and it only goes on my hair not my scalp, most hairdressers these days are familiar with the side effects of chemo and if she/he is an experienced hairdresser they will be able to understand and be better prepared to help you.In terms of aches and pains, I was on femara/letrozole for about 15 months and can empathize with you about the aches and pains, first thing in the morning was the worst!! I walked like a penguin until I got moving, have you access to a hydrotherapy pool, it really is a lovely way to do very gentle exercise, panadol osteo is very good for aches and pains as well, fatigue is probably the worst symptom especially if you have been used to a busy lifestyle, however you really must listen to your body and do not! feel guilty about resting, I have days when I simply find that all I can do is lay on my bed,but those days pass,please accept any help offered by family and friends,there has to be some perks to this shitty disease, you have looked after your family and now its time for them to look after you, when you vist with your oncologist, if possible always take someone with you, you wont remember everything, YOU can do this, we are all here to help with any queries or questions if you want to have a rant then go for it, we have all done it, the cancer nurses here at bcna are always here to chat and offer any advice,we are all on this wagon train together regardless of where we are in our treatment and we all do our best to help one another in what ever way wee can!!wendy55

Hi @shus, there is quite a lot of information on here about all three of the drugs you have mentioned, your oncologist is the best person to sit down and have the discussion with, all three drugs are different all with different side effects, myself, I am on xeloda, I have mets to my spine and liver, I have been taking xeloda for the last two years, this is really a decision that you and your oncologist will make together, try and get as much information as you can about all three and see what happens tomorrow,please let us know how you are going .wendy55

Hi @shus - I think @wendy55 is absolutely right about getting a full discussion with your oncologist - we all react somewhat differently to each drug. I am on Xeloda since January this year. I have found it much easier to tolerate that previous IV chemo I had. The main concern is getting the dose right and the break - it is a flexible drug regime so I like others started on 500mg 14 days on 3 tablets morning and night and 7 days off. Doctors adjust depending on your need. However after 3 cycles hand and foot syndrome kicked in - very painful red hands and feet - there is a whole thread on this on this forum - just type in Xeloda side effects. I am now about to start 7 days on and 14 days without pills to see if the feet and hands will be better. Like all chemo drugs there are good and bad days and after about 5-7 days I get very fatigued and have some gut problems - again everyone is different. However since I have been on this drug I can do much more and have been travelling and able to be out in the world a lot more. I am retired but I couldn't have done any of these things on previous drugs and my scan results have shown good response on my liver and bone mets. All the best with your discussions

Hi @FYONA1, I am going to jump in here if you dont mind, you ask about negative thoughts and how long to live and yes, that is all perfectly normal and natural, well how long is a piece of string? no one and I mean no one can predict how long we are going to live, in fact my own oncologist has not given me a prognosis and nor do I want one, as you mentioned its very early days and of course all of this is flooding your mind, please trust me, it will and does get better, its always there lurking, but as the days pass and you get into your treatment plan it will get easier, I am 5 years as I said since my diagnosis and I know there are ladies here who are 10 years plus on, as for your hair and if you lose it then you will stop the treatment well that is something that is a very personal decision, but please give the ribociclib time to adjust to your body, my own hair has thinned a little but is not obvious to anyone, my hair is cut and shaped short, before in my younger days I have to say I was very vain about my beautiful long blond hair and was very sad that it had to go, however that passed, it did grow back feeling as you do now is how we have all felt, and yes like @JuMuKu, I see/talk to a pyschologist every month, I have a McGrath Breast Care Nurse and a support group I attend once a month, and although most of the ladies there are early breast cancer survivors they have welcomed me and made me feel very special, as I mentioned before you are on the best treatment, I dont even qualify, but thats life, it is what it is, be kind to your self, be gentle, have a good soul cleansing cry, have a bath put on some candles, have a massage, do what ever it takes to put you in a good place physically and mentally,I understand your pain and feelings of negativity, but please if you only take one thing from this message it is that you are not going to die today, tomorrow next month or even next year, we have the best in breast cancer treatment in the world,please take on board all the support offered to you, discuss your feelings with your gp, you dont mention if you have a husband or partner, how are they coping, men like to fix things and this is one thing that they cannot fix, people do not know how to respond to someone who has been given the diagnosis we have, can you arrange for a short holiday, the otis foundation have some lovely places all over australia where you can stay for up to 4 or 5 nights you do not have to take anything, everything is provided free of charge,perhaps you need to take some time out to try and put all of this in perspective, either alone or with someone special, please my dear, just one day at a time, have you seen the videos that several women made last year about dealing with their metastatic diagnosis, they range in ages from late 30s to early 60sin fact you might see me there!!!,so, thats it for now, just know that we are here for you, to encourage you, to cry with you and believe it or not laugh with you -

Faslodex / Xeloda / Ribociclib with Letrozole

159 Replies

FYONA1
Member
8 years ago
Hi @Tilly45
i have woken up feeling like I was three weeks ago very anxious and scared of what cycle two may bring for me in terms of side effects
i have had a manageable cycle one
kmakm
Member
8 years ago
@Tilly45 I am using baking as a form of therapy as well! I find it akin to meditation. You have to concentrate as it requires precision, leaving no room for other thoughts. You have to use your body to lift, stir, fold, pipe, balance, and co-ordinate your movements. I like to move smoothly round the kitchen, to work cleanly and efficiently. As part of my post-active treatment life, I've challenged myself to extend my skills and bake new things, with new techniques. The family are happy! K xox
FYONA1
Member
8 years ago

Hi @ Tilly45
sorry I sent that to wendy55 but that was for you
Oh wow that's great you seem to be doing really well
i also enjoy cooking and baking but have been unable to focus although I'm still doing what I normally would
i have 24 and 23 year old duly children that lstill live at home and I still cook for them and help them out
im 46
thankyoumfor giving me some positive thoughts and I hope that I can keep taking this medication without any unwanted side effects that will make me change my mind
FYONA1
Member
8 years ago

Tilly45 said:

@FYONA1 I’m on my 7th cycle and no problems with hair, I guess it is different for everyone but that also means you could be okay. Ribociclib is not known for causing all of your hair to fall out. I have read as much as I can and I haven’t come across much negativity apart from a couple of people. Try to have a break from reading about other people and their experiences if it is messing with your positive thoughts. I come back when I feel strong mentally. It is really hard at times, I try to find lovely distractions. I have been baking a lot, that helps me. xx
FYONA1
Member
8 years ago
Hi @wendy55
oh wow that's great you seem to be doing really well
i also enjoy cooking and baking but gave been unable to focus
although I'm still doing what I normally would
have a 24 and 23 year old adults that I till do everything for
im 46
you have given me some hope and positivity and I really hope that I'm more like you
fingers crossed
Tilly45
Member
8 years ago
@FYONA1 I’m on my 7th cycle and no problems with hair, I guess it is different for everyone but that also means you could be okay. Ribociclib is not known for causing all of your hair to fall out. I have read as much as I can and I haven’t come across much negativity apart from a couple of people. Try to have a break from reading about other people and their experiences if it is messing with your positive thoughts. I come back when I feel strong mentally. It is really hard at times, I try to find lovely distractions. I have been baking a lot, that helps me. xx
FYONA1
Member
8 years ago
Hi @Tilly45
thanks for asking I'm a full time mum I always have been and my husband runs a business from home so I'll occasionally help him with filing and bookkeeping
i did want to tell you that I'm very scared to start cycle two as I'm worried that the side effects will all kick in I'm scared that my hair will thinnen I went to the hairdresser yesterday and so far so good it still feels and looks the same but it's early days
another lady told me that it will start coming out more after third or fourth cycle
FYONA1
Member
8 years ago
Hi @wendy55
i sent you a private message xx
Tilly45
Member
8 years ago
Hi @FYONA1
Glad to hear your side effects have been minor. It will interesting to see how your tumour markers go, it may take a couple of cycles. My cancer is stable on this combo. No change. I have found the minor side effects have settled even more, the longer I'm on it. I do have to do life at a slower pace otherwise I feel pretty wiped out after a day or two. Otherwise everything is great. I have cut back work from full time to two days a week and that is fantastic for me. What are you up to with your work situation? xx
FYONA1
Member
8 years ago
Hi @Tilly45
i just wanted to know how things are going with ribociclib/letrozole
I will be finished my first cycle on Sunday then I'll have a break
i have been ok just feeling tired and my lower back is sore and a little hair thinning

Forum Discussion

Faslodex / Xeloda / Ribociclib with Letrozole

159 Replies

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