What a hell of a way to start the week.
Still reeling from the news.
They’re going to call me back later once they have the full report but I definitely have more that 1. Will probably start rads next week and they want me to start on the dreaded stroids this evening.
I just don’t know how I’m going to tell the kids…
What a hell of a way to start the week.
I’m so sorry to read this- you must be gutted. Virtual love and hugs coming your way. Once you get started on treatment I hope you’ll feel calmer if that is possible. As you say it’s one hell of a way to start the week. At least you know you are being treated by the best.
Love &hugs Diana xx
Thanks Diana. Hope things are well with you. Give my love to Clare lx
So sorry to hear you’ve had this news delivered to you. I always enjoy reading your posts as you are so upbeat and give such good advice to others. You seemed to be on a stable path too which was encouraging so to receive this news today must be very hard for you.
Rest assured that I, and many others, on this site will be sending you lots of cyber hugs and wishing you well with this new course of treatment you must now go through.
All the best to you.
Love Liz x
Am so so sorry laurie you have been such a support to all us newbies its so very unfair my prayers are with you. Got my fingers crossed for you with this treatment. ((((((((((((HUGE HUGS))))))))))))))))))))) jennie x And if this post doesnt appear am going to scream xxx
Oh Laurie - So sorry to hear this. Thinking of you loads. Big love to you and yours. xxxxxxxxxxxxxx
Sorry to read your sad news Laurie. Have they suggested the cyberknife. Not had it myself but there are ladies on here who have. I saw on the other site that you have spoken to your chidren. That must have been hard. Just to say I am thinking about you at this difficult time and we are there to support you though this. Hugs, Val
Awwww Laurie so sorry to hear that hunny… Hope the rads help a bit xxxx
I agree with val - you should ask if your scans can be looked at by the cyber knife team. I’m also at the Marsden and they are all very proud of their new cyber knife suite there
I had my brain mets treated down the road at the Cromwell because I was diagnosed before the cyber knife was opened at the Marsden.
Gingerbud went to the Cromwell for a consultation (she saw prof Lippitz, i can pm you his secretary’s number if you would like to go there) I am afraid that she had brain mets that were too big/many(I think) so couldn’t have it, - like everything, there’s no guarentees but I am sure it’s worth a go. You might decide that wbr is the best treatment for you but it’s always nice to be given a bit of choice
I had my gamma knife treatment one year ago next week, I’m still here and as I said on another post I’m still me. I was so scared that the brain mets would change my personality and take ‘me’ away but it hasn’t - I still enjoy the same kind of stuff, i still try to be nice to my children (don’t always succeed- but I did manage to help my son with his English homework this evening!) still laugh at my hubbies dreadful jokes.
I am going to try to post a photo of me out for lunch last week with the girls. I look a bit old and ravaged by chemo but I did have fun
I really think you can get through this, the Marsden is a fantastic place to be looked after with this sh***y diagnosis
Love Melissa x
I am so sorry to read your news, I have been thinking of you all week, waiting for your scan results
Sending you big hugs thinking of you and your family
PM me if you need to chat
Hi. Oh Laurie, I don’t know what to say. This disease is just the pitts. I wish I could use a much stronger word but the mods would remove! You will find a way to tell the kids - you have to! You will find a way to face the treatment - you have to. You will find something to smile about ecause you WANT to. Hugs over and over again.
Sadie Xx Xx
Thanks for all your support.
Should hear from the radio onc at the Marsden tomorrow about options. I think I have lots of small, scattered ones, none bigger than 1cm but think that means WBR would be more effective than cyberK, although I will obviously ask about all the options.
Feeling a bit better this evening. Trevor and I told the kids before dinner and they were obviously devastated (12&14). Tried to find a balance between truth and harsh reality. In the end we settled for “1-2 years but who knows - we’ll continue to take it a day at a time”. Have just emailed their form tutors and I think the whole village knows by now. I know everyone is different but when I was first diagnosed, we decided to tell everyone, after we had told the kids becase I didn’t want them to hear rumours etc.
Have had to start taking the dreaded stroids. They wanted me to take 4mg twice per day but I told them at the moment, with hardly any symptoms and no signs of swelling on the scan, I would only take 2mg once per day. It’s bad enough that it’s my first day on Xeloda too! at least my Udderly and gloves arrived today.
Laurie I’m so sorry to hear y sad news but pls try the Marsden I’m with them they are great u will get through this we are all here for u tc hugs Laura x
So sorry you’ve had bad news today Laurie. Wishing you all the very best with the treatment.
Oh Lauire so sad to hear your news and really good luck with your treatment.Love to you and all your family, you are such a fighter I am sure you will beat this.Lxx
I was diagnosed with 3 inoperable brain mets in February 2008. I was admitted to hospital immediately as I was very ill (throwing up, bouncing off the walls, terrible headaches, etc), and my husband was told that I might not make it out of hospital (cue various relatives rushing to my bedside). But they gave me large doses of steroids to reduce the oedema and then a week of brain radiation. I left hospital after a couple of weeks. It took many months to recover as I had lost around a kilo of muscle due to the very large doses of steroids, but the brain mets have not troubled me since. Hope yours get sorted out as effectively as mine.
Two side issues I’d like to mention:
If you have brain mets you must surrender your driving licence to the DVLA. If you drive with brain mets your insurance is invalid.
When I asked my onc if I was “terminal” for the purpose of claiming on my terminal illness clause on my life insurance, he said 'Yes". This meant that I could claim the full amount on my life insurance, and get my pension policies to pay out immediately, which was very useful.And if you are oficially terminal, it’s all about statistics and doesn’t mean you have to die. Back in spring 2008 no one expected me to last long, but Im still here 4 plus years later!
Please get in touch if you have any questions or just want to chat.
Lots of love, Lynn
So sorry to hear this latest news from you, definitely not a good way to start the week
Hoping that all these messages of support help you, especially the ones from Lynn and Melissa. I’m sure you know that we are all here to helpful get through this latest round of treatment however we can - and as long as we can find this thread again!
Good luck and keep us posted.
I had 24 mets but because of their locations it was still possible to treat them with gamma knife. Don’t know if it was the best treatment for so many mets but it seemed the right choice at the time.
My onc at the Marsden is prof Ian smith. (his sec is jenna) you could ask your onc to talk to my prof about it as he referred me in the first place -they originally found 7 mets on the scan at the Marsden - they found 24 on a more detailed scan at the cromwell but lots of them were only 2/3mmm. Prof smith might have formed an opinion about whether it was the right thing for so many mets now it is a year past my treatment date (he said it was unusual but that he was happy at the time)
Pm me if you want my full name and hospital number at the Marsden
I am shocked to hear your news, so can’t imagine what you felt like. Well done telling the kids, good on you and OH. Then reading such helpful posts from others who have been there.
I’ve never posted on a brain mets thread before, so I hope this is OK.
Tillycat and Lynnferg, **thank you** so much for sharing your experience. I have liver mets but my greatest fear bc-wise is of further spread to the brain… I was moved to tears by how well you are doing. So I hope, Alesta, that you are encouraged to read about these experiences, and that you will have all possible good support. Very best wishes, MrsBlue.