Faslodex / Xeloda / Ribociclib with Letrozole

Kattykit

It really is no trouble at all, this is a scary time for you, I hope you find your calm place soon but don't be afraid ask for help and reassurance.xx

FYONA1

Hi@kattykit
i am trying really hard but it's just so hard 
not knowing how long treatments will work and I have adult kids that I want to see get married and I want to be a grandmother but it's so hard to believe that this will happen

Kattykit

Hi @FYONA1 try to stay away from google, most of the 3 to 5yr stats are really old, there is a really good website called breastcancer.org, there are so many women on there that have been soldering on for up to 15 yrs, and with all the new discoveries lately I have hope that I will see my grandbabies grow up. We are only on the first line of treatment and have a lot of other options if this fails us eventually, esp with bone mets. If your hair does start to thin you could possibly look at those hair extenions that they use to make your own hair look fuller, maybe ask your hairdresser about them. Have you tried to listen to those relaxation videos on you tube, I  love the ones that are the sounds of rain falling, I find them really relaxing. I Hope you can relax and enjoy your weekend with your family, take care, Cath.xx

FYONA1

Hi@kattykit I am so grateful that you have made me feel nurtured as you to have your own thoughts to deal with
i will take your advice and get some hair extensions organised cut and coloured to suit my hair
im just hoping that I don't have to stop the treatment if my hair gets really thin I won't be happy at all
i suppose I'll just have to wait and see what happens but I'm sure that it will happen

Kattykit

Hi @FYONA1, all we can ever do is our best, I hope you find the strength to be able to make the choices to give you the best chance at survival so you get to see your children married and give you grandkids. This combination of drugs we are on are much easier on us than IV chemo, that's my biggest fear to have to go through that again, long stays in hospital in isolation from pneumonia and febrile neutropenia. Stay as positive as you can, I am sending you love and strength, Cath.xx

FYONA1

Hi@kattykit I understand that my life is more important but I just can't handle losing my hair for self esteem sounds crazy but that's how I feel I'm so glad that I can share these feelings with you thankyou so very much for listeningxx

FYONA1

Hi@kattykit I'm still worried about my next cycle I'm panicking I've tried to stay calm and positive but it's really hard

Kattykit

Hi @ FYONA1, sorry I didn't get back to you earlier, I know this is all new and scary but all this worrying will just make things seem worse than they really are, how long til you start your next cycle, everything will settle in this week off,  had a bit of extra hair in the brush but it goes back to normal in the break, try and do something you like to do, maybe an outing somewhere fun or even just a nice dinner with hubby or the family. If you don't mind my asking how is your hubby coping, have you spoken to him about how you are feeling, this is a big upheaval for the whole family and you really shouldn't feel like you need to do this alone. I don't have a partner so I am flying solo on this, sometimes I would like to have a shoulder to cry on.Thinking of you, Cath.xx

FYONA1

Hi@kattykit I do I have a husband and he is in a shock I still think although he's been strong and he has been caring for me and coming to my appts i often have a cry and we are both worried about what the future holds in terms of our family 
it's very frightening as I said to you we have son many plans and not sure where to go from here

FYONA1

Hi@kattykit I start my next cycle Tommorrow 
when did you start to have extra hair coming out 
how r u going and what r your thoughts in terms of some of your experiences with this combo??

FYONA1

Hi @ kattykit you're more than welcome to chat with me anytime even though I'm new to all this and am obviously frightened
as I've said previously this combo of treatment scares me more than anything as I hold very strong opinion on personal side effects which are important to me and therefore they are spoiling my way of living and thiking

Kattykit

@FYONA1, it was in the 3rd cycle but has stopped now and as you can see from my pictures it is fine now, these drugs don't make all your hair fall out the same way that IV chemo does. The worse side effects for me are low neutrophils, 0.9 and QT prolongation, I am still on fortnightly ECG and bloods and am mostly 2 weeks on 2 off instead of 3 and I. I also had a mouth infection which needed 2 lots of antibiotics, but hey I'm still here and can still look after my grandson who decided that 2.30 am was a good time to get up and play with Nanna. So here we are. Take care and I will talk soon.

FYONA1

Hi@kattykit at least he keeps you up and at it
is it ok if I let you know how I'm going later on today and during the week
if I'm bothering you plz let me know
I appreciate your support it's so much easier talking this through with you

Kattykit

Sure, I  may not get back to you til later today, hoping for a nanna nap sometime during the day, try to do something you like today,⚘

wendy55

Hi @FYONA1, I have sent you a private message,
wendy55