Hi all , just had confirmed i have brain mets cant believe it ! i have been reading a lot on this site for sometime. Tried to get on tykerb quite soon time ago as you all might no it still hasnt been licenced what is going on !! does anyone know ! does anyone no about brain mets? help i ned more advise i think i am going mad ! my kids are doing exam 1 gcse and the other sats which may be less important so trying to hide it …
i have had ct and oncol asked me to have mri on friday then will await until next wednesday for final decision to see if can remove or not … will i need rads or cemo … so much to take in help feel like cracking !..sophie
so sorry for going on …
Hi Sophie
Its so frightening isn’t it being told you have brain mets? you aren’t going mad just having the same reaction as everyone else in the same position. It isn’t me but my daughter who has brain mets … in fact she had two large tumours … but there are loads of people on here with brain mets and i am positive that they will reassure you. There is so much that can be done today. Whole brain radiotherapy (WBR) is one of the main things they do which will zap the blighters. In my daughters case because she had a tumour too large for rads to deal with … about the size of a large chicken’s egg …she had to have it surgically removed. She was so scared about a brain op but it went well and I have never seen such a big smile when she came round! The other one plus a few odd mets were dealt with by WBR. This was all in the last 4-7 weeks. she has had one scan but too early to see exactly what is left in there. She is currently having chemo and avastin because another ‘lump’ has appeared on her back. She has been through the mill this last 2 months but the scariest was when told she had brain tumours. You are not cracking you are totally normal. I think they only operate if the mets are too big for rads to cope with. I am sure you will get loads of replies and helpful advise. My daughter can’t have Tykerb because she is HER- and that is why she is getting avastin but there are people on this site who are getting it.
By the way we were told by the Onc that once you have had WBR the blood/brain barrier opens and the chemo gets through to the brain… something that it often doesn’t do beforehand.
Good luck Sophie … Lisa & I will be thinking about you … please let us know how you go on. Its hard to keep strong I know but your kids will keep you going. Incidentally the WBR isn’t bad at all… not as bad as it sounds.
Lots of love to you
Sue xx
Hi Sue thanks for your kind words and positive thoughts . i have only just been told … going for mri scan as ct doesnt give a good pic …gets results on wednesday find out options then … dont know much so i dont know the best out come …my onc said he thinks it can be surgically removed , he would not say if unsure ! is this good or bad i will probably have rads , do you know if chemo is used all the time ordoes it depend ??? what area are you in ?? Hope your daughter is ok and is coping its so hard to see your child go through these thing i feel for my mum too !!! THANK AGAIN TRACY XXX
Hi Sophie … we are in Bournemouth. Lisa had her brain op at Southampton as Bournemouth don’t do brain things. They usually do MRI because it shows up mets in 3D and they can look at things at different angles whereas CT just shows that there is something there. Naturally its good to have surgery in that they can see whats there when they open you up and take whatever they find but with small mets they usually use radiotherapy. There is also something called the gamma knife which can sometimes be an option … non invasive surgery … look it up on net. Will be explained far better than I can! Lisa was told that if they didn’t get rid of the second tumour by rads then gamma knife may be an option for her. Only two places do it though … Sheffield and London. Still we are hoping that the rads and now chemo will do its job. No I don’t think they always do chemo after rads (or whatever treatment you have) but Lisa had to have it because another lump appeared on her back which proved it was still spreading. You would be on something I would imagine though … like Tykerb. Make a list of all questions and ask him next week. Thats what we do. This site is wonderful for that … you read about something and then make a note to ask about it.
Good luck for Friday and then Weds … keep posting and let us know how you go
Love Sue xx
Hi sue ,thanks again for your you reply Sue love Tracy xx will let you know
Sophie - so sorry to hear this. We;ve communicated before about tykerb and I can’t believe you like me have not been able to have tykerb. I think tykerb is supposed to be good for brain mets so hopefully you can still get on a trial. Someone else has recently posted about tykerb/lapatinab and there seems to be mixed messages about whther the trials are being extended yet again or are stopping. It’s a complete mess. I think you phoned Smith Glaxo Kline last time we communicatedbut i expect you don’t feel like doing that now. Perhaps ohone the ask the nurse service here and they can help you wit your questions to ask the onc.
So sorry to hear your news but there are positive stories out there about brain mets.
Thinking of you
Kate
Hi Sophie, As Kate has suggested, please feel free to call our helpline for further advice and support on 0808 800 6000. he line opens Mon-Fri 9am-5pm and Sat 9am-2pm.
Best wishes
Lucy
Hi Sophie, just read your post hopefully by now you have had some of your appointments? Its all a bit confronting hey. I had a huge suizure when I was dx and it was some say it would have travelled there before my breast dx (my breast surgeon is now screening heads as well as bodies - all because of ME!!!) It was all a bit of a shock at the time (always thought the chemo was going through my brain?)
Anyway, had big tumor surgically removed 18 mths ago, they left a little baby one in there which was harder to get at, but it started growing about 9mths later then I had gamma knife sterio tactic surgery, and that killed of the naughty baby one. Mri’s are all looking good. and Im sure Im going to prove all those doc’s wrong. Also had 10 days WBR after surgery. I have written a few posts about it, also a wonderful lady Kit Kat did a blog about hers. Im happy to answer any Qs U have
Love Suzy.
Hi all,
Thanks for reply had mri now that waiting game trying to keep busy ! I hate the thought of dying and leaving my children so need to keep fighting …i also hate the thought i having to fight for everything when not feeling too well too
i dont have anyone to fight for me so i will have to get it together quickly xx
Dippykate yes i do remember we have had talks about tykerb and i wonder if i had of been put on tykerb would i of got it in the brain now i feel sick thinking about maybe i give up to soon !!!
i was so upset as now also cant drive i dont no how long for thoe does anyone know? as sometimes it felty sick i could still drive but now i feel i am stuck in as you dont like bothering people …
Also if on wednesday i get options and one is to be able to oper on it C what kind of waiting game is it before i will have it done does anyone know? sorry for moaning on …sophie
Dippykate , hi can i asked how you are doing and what treatment are you up too ?
Hope all is well for you thanks for reply x sophie x
i have brain mets. had 1 tumour july 2006 so had it surgically removed followed by WBR.had some chemo taxol i think but had reactions so stopped it. had mri after 6 months then another 6 months and now its coming up to a year so i think im having next mri in sept. not driving is a pain you have to surrender your licence for 2 years. if you have clear scans for those 2 years you can then reapply for it.no body has mentioned tykerb i dont think it was available 2 years ago.
My breast cancer came back for the 3rd time as 3 brain mets in February. The symptoms were sickness & dizziness. They put me straight into hospital for 10 days because I was so ill, and gave me fluids and steroids, then whole brain radiotherapy (which is really a doddle and seems to have worked in my case). The steroids were gradually reduced and I’m now on just 1 a day, with herceptin every 3 weeks to control my breast lumps.
I’m still a bit wobbly and very tired from the steroids, but other than the niggling steroid side effects eg. indigestion, fragile skin, etc. I’m fine.
Not driving is a pain, but I really wouldn’t want to (I know someone who crippled her 11yr old daughter in an accident due to brain tumors).
The diagnosis of brain mets is a big shock, but 3 months on I seem to be stable, my blood tumor markers have dropped to normal levels, and life goes on.
Best of luck with your treatment,
Love Lynn
Thanks again to all your lovely comments and help … my friend picked me up today and took me for a dog walk… it was lovely and fresh cant help thinking bad thoughts and then start crying is this normal !
Northern girl can i ask if the pain was bad after surgically removed. then you say you had followed by WBR is this radio to the whole head ?
i no you said you went on to have some chemo taxol i think but this didnt agree with you … can you tell me how big your tumor was ? have you had a scan this has been done ? sorry for all quesions just trying read up a bit…
…also does anyone no if i can fly as i may book a holiday for aweek if they say i can have surgey but it maybe a wait for aweek before i have appointment !!! hope so xxxxxxxx
Lyn , you have been throught it havent you , but i suppose life goes on when you come to terms with it i havent yet i know this sound selfish, have you had any surgey ? i wish you and all of us alot of hugs and cuddles i think we all need these sophie xxxxxx
Hi Kate cant sleep but hey you have been going through time too i do hope tykerb comes through for us all so many are depending on it ! i have just had echo so all clear their herceptin keeps the growth slow , in the spine sre moving slightly , but not to worried about them just the brain tumor !
please take care keep in touch sophie
the op wasnt as bad as i thought, i was in a ward where i was looked after all the time (cant think of its name ) for a day after op. then onto ordinary ward.
i honestly cant remember being in much pain so dont worry about that.
i was a bit unlucky i had limited use down one side so couldnt walk without help. but it was only for a week or two and soon got back to normal.
i have forgotten how big it was or even if they told me. i think i was just told it was small and there was only one in an operable place.
yes WBR is radiation to the whole head and im not sure about flying as my hubby wont fly so no foreign holidays for me !!
What a day !!!, only 1 brain tumor 3.5 cm and swelling 2.5,and spec seems to be positive it is removerable goods news… i feel a bit revealed that it will be gone it could of been so much worst…i will next received appointment through for spec in walton under Mr broadbelt , anyone heard of him ?
then should be in within 2 weeks so here goes so scared …
Thanks for advise northengirl how long where you hospital for ? are you feeling better now …
what was the wbr like did you have to wear hat and when do you next scan to see if gone…sorry for going on …
love sophie xxxxxxx big hug
they said i would only be in 4/5 days but with being wobbly i was in 9 days. i didnt like the WBR because i am clausrophobic and you have a face mask made to
wear during the radiotherapy. i have had 2 mri since op and both ok. my next one probably in september.
dont worry too much about the op it will be nowhere near as bad as you think.
im feeling back to normal if if possible to be normal too much anxiety.
i have been for a bone scan today as my wrist has been hurting and x ray was inconclusive. get results next friday.
its unusual but the WBR damaged some of my hair follicles so i have got bald patches its a sod because my hair was probably my best asset lol it was thick and
black now greyish and thin. but what the hell!!
Just wanted to say that I haven’t had or been offered surgery, but don’t seem to need it. Blood tests from 30th April show tumor markers down again from 34 to 32, so very happy about that. I’d just like to get some hair back again after WBR.
Others might be interested to know that, in the past, my hair came back thin & grey to begin with but reverted to normal & dark brown after a few months.
Love Lynn
Hi Northengirl ,
I didnt didnt know you lost your hair with wbr did you lost it all ! as mine is very thick too . even though my tumor is just the back ! i gather this makes no differents then !
I do hope your results are postitive to day good luck and thanks for advise it helps when you know what is going to happen …
Lynn thanks for advise did you loss all your hair and how long was it before you lost it ? i think sometime you dont need surgery it depends on the individual i expect i do hope everything goes ok thanks again sophie
Hi Sophie
My daughter lost her hair at the end of the 2 weeks of WBR although she still has a little piece right at the back! I have since cut it right off as it was showing at the base of her skull even though she wears a baker boy cap. She was told that it can be some months before it comes back. However she is now having chemo too for 3months so it will be along time before it comes back because of the chemo. At least with WBR you don’t lose hair anywhere else e.g. eyebrows, eyelashes etc which Lisa thinks is worse as you can’t cover that up.
We are thinking about you and wishing you the best of luck with surgery etc. You will be fine… neurosurgery has come on in leaps and bounds. Lisa had hers at Southampton and was out in 2 days despite it being a big op with a tumour the size of an average chickens egg removed. Unfortunately she had another tumour at base of skull (cerebellum) which they dealt with with WBR … we still await final scans on that. We were told that you can’t really tell results for about 8 weeks. She has had a scan which showed nothing new but the one in a few weeks will tell us if WBR worked on tumour at back. If it hasn’t there may be the chance of gamma knife.
Have you got a date for op yet? Are you on steroids?
Love Sue x