Hi everyone
I am posting for the first time although often read the wonderful encouragement that you all offer each other.I had breast cancer in 2001 and had the works but have been in remission since. My gorgeous cousin, Lilla, was diagnosed with mets in her hip about 18 months ago which then spread to other hip. She has been treated with zometa and letrozole but has recently had pleural effusion drained after weeks of dry cough and breathlessness, and scan showed multiple liver mets. She started on capecitabine this week but when I went over to see her she is understandably devastated, but admits she has given up with the relentless bad news. She is too anxious to come on this site yet but I told her that there are many women who have been living with multiple mets for years and there are numerous treatments to try if the capecitabine does not do trick. She does not want macmillan nurse yet as feels that is end of road, so I have clarified their role as I think her family would benefit. She has a husband and daughters of 17 and 18, so obviously desperate to see them safely out into the world. I would be really grateful if a few of you could briefly relate your stories or give me anything I could help to encourage her with…her spirit needs a repair job and I am keen to get stuck in.
In meantime, I hope you all have a fab weekend and for those strictly fans…keep dancing!!
Welcome to the forum. I’m so sorry to hear about your cousin Lilla.
If you have a look at my profile (by clicking on my name), you can see that I had a few ups and downs since diagnosed last June. Just after my liver secondaries were diagnosed, I was devastated. It was one of my biggest fears of going back on chemo so soon. I thought long and hard whether I still wanted more treatment, about giving up, about I’d be dead in 3 months time… sounds very similar to your cousin.
But now 6 months down the line, I’ve survived my chemo (it was really hard and it was touch and go at one point) and both my bone and liver secondaries were inactive at the last scan. I never ever imagined myself to be here today without the support and help I have been given.
She is understandably frightened and unsure about the future, worry about whether the chemo will work, worry about her family. From what you’ve said, she’s taking the tablets, So that means she doesn’t really want to give up, “just” hasn’t come to terms with all the bad news thrown at her yet. When she does see some improvement from the chemo, that will be an encouraging sign for her. Lots of women on here had very good result from it and that’s my next one in line if things start to take a bad turn. I really hope it will do the trick for her. If yes, should it fail, there are still many other chemo to try (my oncologist wrote down the names of 4 other drugs!), but I hope we don’t have to go through the failure -> try again process!
I hope she gets all the help and support and encouragement she needs to continue living and fighting. Thinking of you both xx
Hi Annie, if this little info helps I’ve been on Capecitabine since April 2008. I have bone mets but know this chemo is very effective for some of us and many have years of this chemo for their liver mets.
I was diagnosed with my secondaries in 2003 and I choose not to see a Macmillan nurse although many others see their Mac nurses regularly and they are a great help.
Good Luck to Lilla. I hope the chemo works well…x
Hi Annie and Welcome too. I am sorry that your cousin has been given this diagnosis. When I found out I had bone mets in 1999 I thought it was the end of the road for me. I have been on Capecitabine twice and it has really made a difference to my life although I did have sore hands and feet for a while. But it did the job and I would not hesitate to go back on it again. Some ladies on here stay on Capecitabine all the time but because of my side effects I have taken a break for a while and will probably go back on it again at a later date. I have given up work but otherwise I lead a “normal” life. Does your cousin know she can now apply for Disability Living Allowance and that it is not means tested? Please let us know how you are both coping. We all support each other on here. What a lovely cousin you are to care for her so much. Love Val
Thank you so much for your comments and it is so encouraging to hear how long since some of you were diagnosed with mets. I do not know what bumping up means, I have seen it on other posts…is it moving to another forum? I have just reposted as Lilla is now due to have a pleurodesis done up in London, so again, other experinces would be good to hear
hello Annie “bumping up” just means that the thread could eventually disappear if someone did not add a comment to it. So if someone just types in “bumping up” it means that the thread keeps to the top of the pile. It is a bit difficult to explain but hope you understand. Maybe someone else can explain better. Val