Why not join the Living with metastatic private group? Access group via the link here.
Faslodex / Xeloda / Ribociclib with Letrozole
Comments
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Hi kattykit
i can't find it I'm sorry0 -
Hi@kattykit
ive tried to look in my inbox but I can't seem to find any message I'm not very good as this as I'm new0 -
Darn, I don't know what happened to it, I sent you these photos that were taken last month to show you that my hair hasn't been affected, but I get QT prolongation and my neutrophils drop and I have to have 2 weeks on and 2 weeks but it's working as my tumours have shrunk, so I will stick with it as long as it keeps working.None of us know how much time we have on this earth regardless of whether we have cancer or not, it's up to us to decide how we want to go through this life, personally, I have chosen to try and enjoy my life, that isn't to say I don't have bad days, because I do, I cry and rant and say it's not fair, but I am still thankful for every day I get to spend with my beautiful family. Give it time Fyona, it is early days yet. Hugs and best wishes from Cath.xx3
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Hi @Kattykit
oh wow you look fantastic you give me hope when I see that your hair isn't affected
I don't know if I'll be as lucky as my neutrophils were 1.8 and my ECG Was normal so I'm thinking that when I start cycle two on Tuesday if all goes well with my ECG and bloods I'll get hit with many more side effects including my hair
I'm scared as I have very fine hair I don't think that the ribociclib is going to be that kind to me
thankyou so much for showing me the pic xx1 -
Hi@kattykit
i also wanted to know from you or anyone else that has metastatic cancer in the first few months what strategies or ways did you cope
even though we all have breast care nurses and professionals that we may discuss this with what other ways do you cope when you're having these really sad days0 -
I hang out with these guys or I sit on the sand and listen to the sounds of the ocean, which, luckily for me is at the end of the street. This is why I love WA.3
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hi @FYONA1 thanks for asking. Actually the ribo/letrozole combo has now, very recently, stopped working for me so i will soon be on another line of treatment - just working that all out now.
But the time I was on those meds I felt very good and carried on with life pretty much as normal. As previously mentioned, the only side effects were slightly low neutrophils (but I never got an infection) and a bit of tiredness. Hopefully that will be the same for you. Sounds like it's going well so far?
Have a lovely long weekend. I am!0 -
Hi@gjf
could I plz ask you where u have mets
i am new to this so I'm not sure where you started
while you were on the ribociclib/letrozole did you tumours shrink0 -
Hi @gjf
i have only just been diagnosed with mets in my spine so I've only just finished the first cycle this is my week off and next Tuesday I go for my next ECGand blood tests if everything is ok I will continue with my second cycle but as I've said before I'm scared and anxiousive only had minor side effects in the last few weeks
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That is my daughter and my gorgeous grandson, one of seven, they are who I live for, every day with them is precious.1