Hi I am knew to this, I am writing this on behalf of my mother, she has just finished taxol chemo for liver mets, her scan half way through was gd and showed liver met had shrunk but her scan last week showed tliver has has progression and that she know has brain mets too, they thinK they might have missed the brain one as she has never had a full body ct. She is starting WBR next Monday for 5 days but her oncologist has told her not to make a decision about more chemo till she has had WBR treatment, my mum is a positive lady and says she will take more chemo and wants to see her grandchildren grow up. What I am asking have any of you been in this situation? Is this the end ? My mum is very tired just now she is on dexmethasone just now too but my worry is that the liver will keep spreading before she getschemo!
Welcome to the BCC forums, I am sorry to read about your Mum’s progression you must be having a very difficult time at the moment. Our helpline team are on hand 9-5 weekdays and 10-2 Sat on 0808 800 6000 so please feel free to call to talk your concerns over with someone in confidence, they offer a very good listening ear.
I am posting a link to the BCC secondaries information page where you will find information booklets which you may find helpful, there are specific ones about liver and brain secondaries:
I don’t think that delaying chemo for 5 days is going to be a problem as far as progression with liver mets is concerned. I am guessing that her last 2 scans would have been 2aybe 3 months apart? Oncs quite commonly delay chemo by 2 weeks or more, even when scans are showing progress (unless the progress is very rapid and it is really affecting your mums QOL). I have brain &liver mets (+ lung and bone !) I have had chemo delayed for treatment for brain tumours, it has also been delayed for holiday (once last year and and again this year). My liver tumours were found in may 2009 and my brain mets in June 2011. Both times I took dexamethasone as that made me feel generally better - although I’m not a big fan of the SE’s of the steroids
There wasn’t any significant progression in the liver mets when I delayed chemo, in fact the first time when I went away and had a very chilled, relaxing holiday with my family the mets actually shrank - no one knew why I think it was just the whole meditation/relaxation thing that I did for 2 weeks
Hi tillycat,
My mums Scan was in feb that one showed chemo was working then the one in aug showed brain and liver progression, she has now finished WBR and is doing really well, still on steroids, she isn’t having any symptoms from liver which must be gd, when you where diagnosed with brain and liver mets did you oncologist tell you now is the time to sort everything out? My mum did and that is what is worrying me as my mum isn’t ready to give up her fight yet?
Hmm
Your mum’s onc may not be telling her that she hasn’t got long. I think they usually try to avoid giving time frames nowadays. He may just be saying that you are moving into the unknow now. Brain mets are relatively uncommon so no one really knows what’s going to happen.
Well as far as getting my affairs in order my onc didn’t really say anything about that at my first diagnosis. When the liver mets were found one of the registrars told me that liver mets ladies typically survived 3-6 months. I hadn’t asked , so I was a bit shocked. I spoke to the breast care nurse and she made a note on my file that I didn’t want to discuss life expectancy unless it was less that 2-3 months ( at the time I thought that made sense as I wanted to be able to prepare my children). When the brain mets were diagnosed (2 years after the liver mets - so much for the 3-6 months!) the onc told me that he thought it unlikely that I would be around in 3 months and I might want to get my affairs in order (or words to that effect) - he was only doing what I had asked. But that was 16 months ago so he was very wrong. I have come to realize that even the specialists don’t really know so asking is a bit of a waste of time. Listening to their ‘best guess’ can be pretty depressing. I just don’t go there any more
I am also beginning to realize that the end for women with secondaries can come very slowly, but for others the end can come very fast. Some women seem to have lots of time knowing that things are going downhill, treatments are not working etc. But for others there seems to be a sudden ‘crisis’ and the end is shockingly fast. In some ways that’s no different for any one. People who live to be very old can become ill and gradually fade away or they can have a heart attack, stroke etc and go very suddenly.
There was one lady on this forum who was told that she only had a couple of weeks just before last Christmas. She lived until May and seemed to have some very good days. (she posted a sort of blog which you might want to read, her user name was potmaid and the thread was called ‘i am in a really surreal place’, there are some funny days and some very sad days in there) When she died it was in the way she wanted, with her family around her and I think she was content. Another lady was really fighting hard but her cancer was aggressive, when she died it was a shock to everyone, she died quite suddenly from heart failure (I think partly caused by all her treatment). Her username was gingerbud and she started the Triple negative thread
Its so hard to know what’s going to happen. I hope that I get some time to prepare but I now realize that no one can give me a time frame that they can guarentee, and maybe that’s for the best. Before this whole cancer lark I had no idea when I was going to die. now I know it’s probably going to be sooner than I had hoped and it will probably be the cancer that actually kills me but do I want to know any more? Probably not.
Love tillycatxx
Hi, I am new to the forum, but this thread seems to have particular relevance to me. I, too, have liver, lung and bone mets that are very well controlled with chemo (diagnosed January 2010). I have just been diagnosed with brain mets and am half way through a course of whole head radiotherapy, which I am finding tiring, but otherwise OK. I am also on a course of Dexamethazone.
For me, they have not changed my chemo regime, though,typically, they just decided to give me a break and move from every other week to every 6 weeks! I guessthe disease decided I just likes the hospital visits too much!!
With regard to life expectancy, my oncologist nevermentions time spans, and that works for me. We just take each new thing as it comes and work through it. When I look back, I am certainly a lot better than I was - I had a year off work, and am nowback part time with a wonderfully supportive employer, and I have more energy than I did when I was first diagnosed with secondaries. So all in all I think I am saying that, I feel agreat deal can be done, and it is not necessarily doom and gloom if the disease spreads.
I hope that thishelps someone a bit
Xx
