Forum Discussion
Giovanna_BCNA
8 years agoMember
New to the group with spinal mets
@FYONA1 posted
hi everyone
i really would like to hear from someone who is going through mets to the spine I was diagnosed a few weeks ago and did radiation and am currently doing letrozole and ribociclib
am feeling very scared and worry about some of the frightening side effects that I may experience
if someone can plz tell me how they're feeling that would be very much appreciated
hi everyone
i really would like to hear from someone who is going through mets to the spine I was diagnosed a few weeks ago and did radiation and am currently doing letrozole and ribociclib
am feeling very scared and worry about some of the frightening side effects that I may experience
if someone can plz tell me how they're feeling that would be very much appreciated
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26 Replies
- FYONA1MemberHi @wendy55
i sent you a personal message thankyou
fyona xxSign in to react to this post - FYONA1MemberHi@gjf
thanyou so much for sharing this with me
i went to the hairdresser today and had my hair cut and she checked it for me I will be continuing to do this with her every three weeks as I'm worried about it thinning out or losing it
most of the women on this combination have experienced some sort of hair thinningSign in to react to this post - wendy55MemberHi @FYONA1, have sent you a private message,and I agree totally with the above,
Wendy55Sign in to react to this post - gjfMemberHi @FYONA1 , sure thing:
I feel glad I, and my loved ones, have time to prepare for the end - which hopefully is a very long way off!
i feel grateful I am being so well cared for, by my loved ones and the medical team plus the wonderful charities like BCNA
I also treat myself to the following whenever I can: listening to music, have hot baths, spend time with friends/family - especially those I don't feel I have to make an effort with!, I exercise a lot (walking, swimming, cycling etc), I try to relax, read a book, I've taken up learning the piano and I love it, I get out in nature even if that's just in the garden, I stroke the cat, I try to meditate, enjoy the winter sun, and eat good food. And I try hard (not always successfully!) to be in the moment when I'm doing any of those. I work for myself so I'm trying to give myself time off and at the same time make my work as un-stressful as possible.Sign in to react to this post - FYONA1MemberHi @gjf
i forgot to mention to you that I had my ecg and bloods yesterday everything was good to continue on with the ribociclib and letrozoleSign in to react to this post - FYONA1MemberHi @gjf
i would be very happy if you could share some of those ideas with me plzSign in to react to this post - gjfMember@FYONA1 I only know how I feel, and yes the uncertainty is without doubt, hard. I was diagnosed 10 months ago and it was hardest then, in many ways. I’ve got more used to not knowing, my oncologist does not give much away nor does she really know. Of course, no one really does. I have my own ways of dealing with this which I am happy to share but... sometimes positive thinking and peppy people aren’t what one wants to hear. It’s not everybody’s cup of tea! Sometimes though (not always!), that way of thinking helps me. I do also think giving yourself time helps...try to relax, breathe and treat yourself at this really difficult timeSign in to react to this post
- FYONA1MemberHi @gjf
how should I feel if I've been told I might have five to ten years to liveSign in to react to this post - gjfMember@FYONA1 yes I am pleased about this I didn’t actually know hair loss was common for people on this combo. All the best.Sign in to react to this post
- FYONA1MemberHi @gjf
thankyou for letting me know
you must be very fortunate with your hair as most women on this combo have experienced hair thinning/loss
i guess I'll just have to wait and see what happens to meSign in to react to this post