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

kmakm
Member
8 years ago
@"Kiwi Angel" No worries, I'll PM it to you. Can you send me the rhubarb, apple & custard cake recipe?!
Kiwi_Angel
Member
8 years ago
@kmakm could I get the recipe for that loaf too - sounds good. I’m gonna try and make a rhubarb, apple, custard cake on the weekend. I’m not a very good baker - there are only a few things I can do - I can do a good pavlova. I’m better with savoury dishes.
Southgirl
Member
8 years ago
@shus (from way back at the beginning of this post) - I'm wondering what treatment you and your oncologist decided would be best for you to move on to? I hope you are going ok. Also, good to hear that so many of you are doing well on Letrozole/Ribociclib. I was diagnosed Stage 4 just a little too early for that combo, so I envy you. Hopefully it will soon be approved as a second (or later) line treatment. xx
Giovanna_BCNA
Member
8 years ago
Hello @FYONA1
sending you a private message
FYONA1
Member
8 years ago
Hi @Giovanna_BCNA
IM SORRY IF I WAS IN TILLY45 way that wasn't my intention I was only asking as Tilly is on the same treatment as I am and I was just asking her a few questions
FYONA1
Member
8 years ago
Hi @Giovanna_BCNA
thanks for asking and yes I was struggling over the weekend and every day actually
i have called the nurses a number of times but it doesn't always help
this whole diagnosis is too hard and my treatment is not making me happy at all I think that this is the biggest problem and not knowing whether to stop it and go on to something else
Giovanna_BCNA
Member
8 years ago
Hello @FYONA1
sending you a private message
FYONA1
Member
8 years ago
Hi @Tilly45
i sent you a private message thankyou fyona
FYONA1
Member
8 years ago
Hi @ wendy55
ive sent you a private message thankyou fyona
FYONA1
Member
8 years ago
Hi @tilly45 I've just sent you a private message
thankyou fyona xx

Forum Discussion

Faslodex / Xeloda / Ribociclib with Letrozole

159 Replies

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