Faslodex / Xeloda / Ribociclib with Letrozole

I have mets in my right femur, I have had a pin inserted the whole length of my thigh,  I  also have them in both hips lungs uterus, scapula, skull and pancreas. This returned after 4 yrs on tamoxifen. It seems to be working, my last scan said some had reduced and others were stable., but as I  said we are all different. I  am just glad that I can still have my grandson over and feel able to cope with an active 3yr old on my own.

Hi Kattykit
where have you got your mets
my have spread to my spine t11
i am really really worried about all the side effects I was diagnosed oboist one month ago after almost seven years
itsdevasting I was told that I was in remission then two weeks later I had back pain and was told that's my cancer had recurred
im not sure that the side effects won't hit me as most women that I've spoken to have lost alt of their hair if not all of it and the side effects change each cycle have you found that with yourself

Hi@FYONA1, I have been on it for 5 months now, no special diet just good food and the odd treat and I just use a good shampoo and conditioner. Everyone is different though, it's all a lottery, I have my hair but am neutropenic and get QT prolongation every 2 weeks so I usually have 2 weeks on and 2 off instead of 3 on and 1 off. Good luck with everything, give it a good go, you can't be as unlucky as me, I am in the 7 percent that get the shit  side effects, although having said that I don't feel as crappy as you would expect.

Hi Kattykit
thankyou for letting me know about your hair
i know that my health is more important and my hair isn't but unfortunately I don't want to lose any of it this time round
how long have you been on this combo and r u using any special shampoo or treatment 
also have you changed your diet since your diagnosis

Hi @FYONA1, I am on Ribociclib, letrozole combo, my hair is doing OK, you just need to make sure to try and eat as healthy as you can.

Hi JuMuKu
im understanding from your comment that you've lost most of your hair? How long have you been taking ribociclib?
ive decided that once I reach the stage of hair thinning that I'm not happy with I'm stopping 
I've already discussed this with my oncologist
i have been introduced to another lady that has been taking ribociclib/ letrozole for nearly 12 months now and her hair still looks great
have you lost most of your hair and is that why you have had a short haircut

Hi Fyona1
Re hair thinning, my manager who used to be a nurse commented that she’d noticed my hair thinning over the past 6 months. I hadn’t.  I’ve still got most of my hair with a few barely ‘haired’ patches. My hairdresser cut it with scissors, she didn’t buzz cut it,  very short all over. Many people, who don’t know my diagnosis think I’ve deliberately had it cut like that, and say how much they like it. 
I don’t know whether this will be helpful to you Fyona but I have found seeing a psychologist very helpful, if you’re not doing that already. You will be eligible for up to 10 Medicare subsidised sessions per annum with a GP referral. I felt quite distressed for about a month about my losing hair and now feel quite OK about it. Much, much less self-conscious. 
Encouragement and care from my family, friends, metastatic support  group and my psychologist have all made a huge contribution towards that change. 

I wish the same for you.

Hi @JuMuKu
I was just interest to know whether you had hair thinning as well before your experience with alopecia
ive just started this combo of treatment and I'm very tired I have a few aches and pains anemic my hair has already changed it worries me 

Hi @Tilly45 -so sorry to hear this. How about calling the network support line and having a chat to one of the nurses who have a wealth of knowledge. So much to take in -try and take it a step at a time and keep connected here  -we have all been through this and I can say there are rough days but each day can and is different. All the best

Hi wendy55
thankyou so very much for taking the time to explain everything to me I really appreciate your time and effort
yes I will go and talk to my hairdresser as I really don't want to lose too much of my hair I realize that our health at this time is more important but I also don't feel confident having no hair I don't like the thought of wearing a wig at all and I also don't like hats
is your hair obvious to others or just to yourself and your hairdresser
i feel very negative as I said and I often think of when my journey will end I can't get these thoughts out of my head