In a bad place...

Hi Lorna so unfair what you are now facing you must feel so let down sometimes I think people seem to get the bad luck other people seem to avoid . Right now you are in shock and can see no way out which is a totally normal reaction everyone would feel.the same we are only human and information like that is about the worst we can be expected to endure .If you haven' done so already call the helpline or failing that the Samaritans you need somone to talk to .Also cancer takes away peoples control you can decide what you want to do its your choice . Also have you family or close friend you can be with you shouldn' be on your own things always seem worse if you are facing it on your own . I also hope someone who has had wbrt will respond to your post with their own experience it' always better to get first hand reports rather than leaflets or info from the internet .And lastly we are all here for you you can speak to me or anyone else at any time even if we don' have the answers you are not alone take care 

        Sue xx

Hi  Lorna

 I  had this  treatment in December it  is  devastating   however  not painfull  in  any  way

 They make you  a mask to fit over your face  so they can hold you in position  to  deliver the  radiation

 If you  are  in  anyway worried  about it  you can have  a drug to keep you calm 

 You  then return  for the  treatment   usually the  following  week   when you will  geet  between  one  and five  doses you will be told in advance

 They  lay you on the   machine like  a MRI  and  clamp your head in position   again you can have the drug to relax if you need it

 It takes only  minutes    you feel nothing  no  pain

 You then  stay  on the steroids which  they gradually reduce

 After  twelve  weeks they see you  again  after an MRI  

 Dont  give up   fight with me    and  stay positive 

xx   

Sue again Lorna have you asked for a second opinion as well .I know Tony M did the team you have had so far don' seem to have done the best by you .There are also trials that will sometimes be available to people let us know how you get on lots of hugs xx

Hi Tony M. I have had radiotherpy on my neck about 4 months ago and worked very well. I was diagnosed with Brain mets november 25th. Put on steroids immediately told us how urgent it was kept me in overnight so i could get mri scan next morning...which never happened they srnt me home the next day. We have found it so hard to come to terms with and live a normal life. i am now so panicky frightened to do anything. Its now January 20th . I had to go through pals to get my urgent mri scan ..that was new years eve. Gp has now found out i dont just have one tumour but a few news to me... and i csnnot have the Stereoradiotherpy that they planned. I cannot believe i have just been left. I feel its their fault i cannot have the Stereoradiotherpy they left it too long. So now i have bern told its Whole brain Radiotherpy..i have heard awful things about this treatment ...Change of personality memory loss... i am terrified. A friend was given just chemo which i wouldve gladly had 8 weeks they wasted . So i hasve an appointment on Wednesday for planning appointment. I dont know whst to do...will i still die in months ? The oncologists never tell the truth thats whats so bad.   My hubby and 2 children are coming too. 

I have been fighting Ovarian  cancer since 2012 and done well. ALWAYS told it will not go to Brain... but it has. I just so want to speak to someone who has had full brain Radiotherpy and what were the results...i know no one. 

Thank you so much for replying . Very grateful . 

Thank you Sue for your most welcome reply. I am grateful. Sering oncologist for planning appointment on wednesday. But im terrified of what i will end like as i just explained to Tony M. 

My family are so good but i feel alone and so scared. Am i going to die very soon..is there any hope at all? 

They promised a certain treatment then left me since November 25th with just high dose steroids. Feel like they just arent bothered. I do everything they ask.... No idea what yo do.  But cant live like this...i want to live but i dont think ill make it now. Everything is so negative. So sorry to moan. But thank you for replying x 

My husband had whole brain radiotherapy back in April and had very good results.  He had no pain but he did lose his hair a few weeks later (which grew back in time).  He had a lot of tumours and his memory, cognitive skills, speech and sight were already badly affected before the treatment but they were all greatly improved by the treatment.

Sadly, in his case, the benefits of the treatment were not long term and over the next 8 months the symptoms slowly crept back. He died 5 days ago but the treatment gave him several months that he wouldn't have had.

You are not moaning you are saying how you feel about an impossible situation .Gather your family about you and let them shoulder some of this that is what family is for better or worse in sickness and in health . You will face it Lorna just take it one day at a time that is all anyone can do .Bills results are on 2nd Feb we don't know what the future holds and sometimes the present isn't so great but we are still.hanging in there .Good luck Lorna and keep posting we have your back .

        Sue xx 

Sorry for your loss you have been to hell and back by the sounds of it . The worse thing about brain mets is they take the person long before the cancer does.Still adapting to Bills new personality parts of which I don' like but the man I love is still here and will do the best I can for him as long as I can .Take care of yourself and all my best to you  

           Sue xx 

I am so so sorry to read your husband  has sadly passed away. How absolutely devastating. 

And i thank you for taking time out to respond to me. 

I am very scared but its not knowing if i have much time ..i gues ill be told in clinic. 

I hope you can stay strong through your very difficult and sad time x

hi  Lorna

   its me  again 

 only  we  as  sufferers  know  how  we  feel  .  I am afraid  we  have  little  control over   the  emotions  from  the  steroids   and none  from the  brain  damage that we  may  have suffered  . 

 On the  other  side  are our  closest  family who  will be  taxed to the limit  by  our  change  of mind   and inabilities to   be  the old us

 The  third part of this  equasion  is tthe  Oncologist    who basically is  on  a guessing  game 

  I  will  take you  back to  my beginning

  4 years  ago  I had  bowel cancer   which  was  within   the  walls of the  bowel   , nowheree  else    lymphs  or  anywhere    . It had taken 2 years to find  it    after failing the   poo test

In  January  2017   I was ttold   after tests  that  I was   cancer   free   however   unbeknown to  the  Hospital   a rogue  blood  cell   had  escaped in thee  operation  4 years  ago were

 Th is   set itself up in  my   lung  and  was  undetectable  by any test ,  at some time  it  decided to move to my brain   probably   late 2016 .

 In June 2018   I had  a brain  seizure   and  was hospitalized   for  four  days   . In the  words of the doctors      " you  are terminal    you may only live  for  weeks" and they had  age assessed me   as well (73)

 After  8  weeks  of  argument    and with the hospital and  after my MP,  GP,  Newspapers And the regional  cancer   Executive  getting hold of the hospitals  failure I was  sent to the  top   brain surgeon  at  Addenbrrooks  Cambridge

 Within the  week   I was  councilled  and  told the  risks   of open brain  surgery.  I had the operation  and  was home in fourr  days

 There  tthen  as is always    a 12 week  wait  between operations then theyy removed thee  lung  tumour

The  brain seemed  fine   some  trembling  and  general weakness and  I was told the  lung  tumourr  would  never return

  Thee  GP  insisted on  a brain   scan    and they did  a CT due  to tthe dead leg  six weeks  after thee  lung  operation

 The brain  tumour  was  back   however  I could not have  an MRI  until  12 weeks  after the  lung operation

 I was having problems witth the Oncologist  in  my  original hospital with his attitude so when  I  had the  result of the MRI   I transferred  my treatment in total to  Addenbrooks

 Within  days   I was  seen    again    I had two tumours  in the  same site  as the original operation

 Again within days     they  gave  me radiation   to  both   by  steriotatic   surgery

 I have  6  weeks   now before  I go back  for the  results   after  a  full body  MRI

 I have met  twice   with my  new Oncologist   who  is much more on thee  ball   tthey even found blood clots on my  lung  from DVT  due tto  the high risk  with cancer  and  I have clot busters  as well

 \\\\there  are two other  points yo

 The  second is  as you  are terminal  you are entitled to  a DS1500  which  allows you to claim    a weekly grant   from the DWP   it is not means tested   , you may also have  a blue disabled card again  ask the GP

 Well that tells you where  I  am  at

 With regard to the Oncologist   he  will only  give us weeks  or months of prognosis  as they have no way of knowing  how the brain cancer  will affect any  of  us

 With treatments   I haave researched     there  is  PROTON BEAM    which they may  send you for  but not in UK at the moment. Look it up  you can haave it privately  at  a cost in Europe  or the US

 The  the following drugs DABRAFENIB, PEMBROLIZUMAB  and TRAMETINIB     which  I will discuss with my Oncologist on the nest visit

There  also  trials of new drugs that you may wish to go  on

 Well that is it  apart from the fact  that  I am still  here  even though they told me  I only had  weeks

 You need to be positive when you see these people   , be in control  not them control you 

 Take  a list of questions  with you  to ask

 Most of  all hang on iin

 You  may get  type 2  diabetis  from the  steroids  so worth  the simple test with the GP