Faslodex / Xeloda / Ribociclib with Letrozole

ps, forgot to mention I have mets to my spine and liver and am currently on xeloda,blame it on chemo brain,{weell thats my excuse and I am sticking to it!}
wendy

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 gjf
i just wanted to ask you how you are going with the ribociclib and letrozole
what side effects are you experiencing and have you experienced hair thinning 
I was diagnosed one month ago and into my second week of taking the ribociclib and letrozole 
I am experiencing fatigue and a few aches and already my hair has changed

Hi@tilly45
i was diagnosed about one month ago 
I had breast cancer in 2011

Hi @Tilly45
this is only my second week on the ribociclib/ letrozole
feeling ok other than being tired and a few aches and pains 
also my hair is starting to already change 
my thoughts are all over the place at the moment it's really hard to get my head around this whole diagnosis I'm struggling but very negative thoughts and I'm not sure how to stay positive right now

So sorry to hear about your diagnosis @FYONA1 The ribociclib seems to working really well for me and I have only heard positive things about it, although I am only just starting to find people on it as it has been so inaccessible for most.  I would really like  to hear how it goes for you. I was diagnosed with stage 4 last July and started on ribociclib around December, just after that I had my ovaries out. I'm 45 and all of this has been really challenging. I am so glad to be on this treatment now. Thinking of you. xx

Hi@tilly45
thankyou for letting me know 
I've just been diagnosed with stage 4 mets to my spine and I'm just starting this combo treatment and I've read really frightening stories on other forums 
thankyou for letting me know about hair thinning as ths is one side effect that I don't like I'm very conscious of my hair

Hi @FYONA1
I am definitely finding A lot more hair comes out when I wash it and blow dry but it doesn't seem noticeable at all. My hair dresser says it's okay and not thinner. I am using a really good shampoo and do a treatment each week. I try not to comb it too much when it's wet as this seems to make it worse. Overall I don't think it looks different. I don't seem to need to shave under my arms any more and leg hair is not grow back as much after I shave. Overall I'm pretty pleased.

Hi @Tilly45
I have just started the ribociclib and letrozole combo
i was just wondering if you are experiencing hair thinning 
I have already unfortunately started to experience this side effect

Hello Shus
Sorry to hear that your current treatment is not working. 
I wonder whether the impact of hormone (endocrine)  therapy is somewhat dependent on where the patient is in her hormonal life, pre or post-menopause. 
Im in the later groip. Ive been on both Letrozole and Ribociclib for the past 12 months and have had very side effects. And, in the past month I have started to experience pattern alopecia which I understand can be a side effect for a minority of users. 
In the end, it feels like a small price to pay. 
Good luck!
JmK