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Brain Mets ladies

14 REPLIES 14
bc-lass
Member

Re: Brain Mets ladies

thanks Nicky x
nicky08
Community Champion

Re: Brain Mets ladies

Bumping up

bill-ben
Member

Re: Brain Mets ladies

I was told last year when I was diagnosed with brain mets to give in my licence. I must admit I still have it as I don't have a passport so it is my only photo ID!!! I wouldn't dream of driving though as my eyesight is not good on my right hand side but I am sure theere are millions of people out there with worse eyesight than me judging by some of the appalling drivers on the road!

bc-lass
Member

Re: Brain Mets ladies

are you able to drive with brain mets?
bc-lass
Member

Re: Brain Mets ladies

Hi SFP what were your symptoms!m All the best with results xx
SDP
Member

Re: Brain Mets ladies

Hi girls - I have brain mets too (along with liver, lung and bone) .. don't post very often but have a read every now and again! I have had WBR and then Cyberknife (once so far)!  Haven't had my follow up scan yet so don't know the outcome (always a lovely place to be)!

Mindy63
Member

Re: Brain Mets ladies

I have just stumbled upon this post and just want to say that, Bill-Ben you seem
Like an awesome person.

bc-lass
Member

Re: Brain Mets ladies

bill-ben are you still able to drive with brain mets?
bc-lass
Member

Re: Brain Mets ladies

thank you for all this info. inhave not formally been diagnosed with brain mets. i gave a funny pulse sensation above right ear and twitch in hand. i mentioned to onc and he will monitor but i have v weak kidneys and he said not good idea to keep scanning as it affects kidneys. i see my haematoligist on 11 so will mention again as not convinced. sometimes my left leg just 'goes'. i have lynphoma too.
bill-ben
Member

Re: Brain Mets ladies

Hi there again bc-lass sorry that you are on here as well. There are a few of us with brain mets but it doesn't seem as common as other mets.How long have you had yours? I got diagnosed with breast cancer last year and had a mastectomy, my choice, at the end of April. Previous to this I had been to the doctor a couple of times because I was having trouble with my balance I explained that I was wobbling about as if I was drunk! It was put down to probable ear infection as I passed a load of little tests the doctor did but then a few weeks later I had a big red mark which I thought was a burn come up on my boob which got diagnosed as cancer. After my surgery I was due to have a CT scan and MRI to see if there was any spread of the b/c then one morning I got up and my vision had gone peculiar in one eye so I phoned the breast care nurse and it was arrange to scan my brain and hey presto brain mets as well as spine ribs and liver. Within five days I was sent off for 5 sessions of radio therapy on my brain and then started on Fec chemo after what seemed an age to sort out. Unfortuneatly me and Fec didn't get on too well and I stopped eating and barely drinking for six weeks and lost three stone in 8 weeks.When I was scanned again they felt the benefits of the Fec where far outweighed by my deteriorating health as I really couldn't eat anything and barely had the strength to get out the armchair. I was put on Letrozole which I got some favourable result from to start though I was told it only worked from the neck down! I had another scan but the showed that the couple of steps forward I I had taken had gone to a step back so am now on Docetaxel but I have it in a reduced dose once a week instead of the whole lot every three weeks to minimise the side effects. I have had 3 lots so far only another 15 to go! Lukily no side effects apart from the fact I am losing my taste.I was eating chocolate last night but it was if the half the flavour had been taken out. At least what I could taste tasted normal when I was on Fec everything tasted disgusting and would gag on anything that went in my mouth!

I have found that my brain mets have been pushed to one side as in " we don't like to keep scanning it and will rely on symptons to tell if their is a problem". Trouble is when something creeps up slowly on you you tend not to notice. I am lucky that I have no headaches or any thing like that it is really only my still wobbly legs and my sight that causes a problem. The met is by my left ear somewhere and is pushing on my optic nerve which effects the sight in my right eye, If you could imagine looking  through very very thick net curtains into fog that's what I can see. I have been told it is inoperable but I really am not happy with the information I have been given so far so when I see my oncologist this Thursday I am really going to badger for more info. Last year when I was feeling really rough I was visited several times by a hospice nurse who told me alot of oncologists don't pass on information as patients don't want to know but I want to know everything all the ins and outs.

What are you having done to your mets? I must admit I find it frustrating on the forums when you read that people are getting this treatment or that some of it high tech gamma knife etc which all boils down to post code lottery with what is available in your area. Where are you? I am in what is today a very wet miserable North Devon (all those poor holiday makers you have desended on us this week!!)

Example of my stupid brain I have just spend ages writing all this pushed the wrong button and it all disappeared luckily whilst screaming with frustration I saw out the corner of my good eye that it had auto saved just as I was going to chuck the laptop out the door!!! It's at times like this you wonder is it the brain mets causing you to do odd things or just the fact you are getting old and daft ( I'm 59 ) it's the same with other everyday aches and pains is it just normal ache or is it the cancer. You can land up totall paranoid!! Well I hope I haven't bored you with my story and I would be really interested to hear your experiences so far. Take care from a fellow brainy!

bc-lass
Member

Re: Brain Mets ladies

ok that would be good xx
bill-ben
Member

Re: Brain Mets ladies

I am a brainy as well also spine ribs and liver!!! Oops battery about to die get back to you tomorrow

bc-lass
Member

Re: Brain Mets ladies

thanks
Sam_BCC
Member

Re: Brain Mets ladies

Hi bc-lass

 

Whilst you are waiting for a response from other users I have added a link here to a previous thread on

brain-mets which you might find helpful to read or perhaps you may want to post a message here.

 

http://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/just-diagnosed-with-brain-mets-...

 

I hope you find this helpful.

 

Best wishes Sam, Facilitator

bc-lass
Member

Brain Mets ladies

Anyone out there with brain mets?