Brain Mets Newbie

Public Archive
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Hi Ladies

I hope you don’t mind me crashing on over here. Up until Saturday I was just another primary breast cancer patient having had adjuvant treatment. I moved house on Friday and collapsed with seizures the following night, was rushed to A&E and it turns out I have multiple BC nodules in the brain so I had a dose of whole brain radiotherapy today and another one tomorrow.

I feel OK right now apart from the shock of the news, I’ve been told it should be another 6 months before I need any other treatment and I may yet be a candidate for the PARP trial as I’m off the scale with BRCA1 expression.

In all honesty I’m just trying to adapt to the news that I’ll not live that much longer and I haven’t got a clue how to do this.

I’m still hopeful for options but I’m not wasting time now for sure.

How do you all manage, I can’t stop shaking.

Lots of love

Angie

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Hi Angie…I’m so sorry…I recognised your name from reading other posts from you in other forums. What a shock for you…no wonder you’re still shaking! There are lots here who will be able to help you more than I can…but just wanted to wish you all the best with WBR…Belinda…x

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Oh Angie I am so sorry. Its nodules and not a full blown tumour so hopefully the WBR has sorted it out… it should have done. It doesn’t take away from the shock though. I know how you must feel… but Lisa had two large tumours, one as big as a chicken’s egg. Please keep strong and positive … I am thinking about you and have everything crossed for a positive result.
Love Sue x

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Hi Angie,
Just wanted to say am so sorry about your news and wanted to send my very best wishes. You’ll find fantastic support on the secondary forums. It must be such a shock for you and to go straight into the radiotherapy but I really hope it is effective and good that no time has been wasted in getting treatment.
I remember the total shock I had last Feb when my secondaries (in lungs and lymphatic system) but am currently clear after 9 months of chemo so things really can improve and the shock does wear off.
A housemove in itself is stressful so it must be so hard for you but hopefully time will help.
Hang in there.

Love and best wishes,

Anne

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Oh Angie

What a horrible horrible shock for you. There is no easy way to get news of secondary spread but it is a nightmare to collapse with seizures like that. You will find alot of support and help here- people are really knowledgeable and share their care and time.

How do you manage this ? I really don’t know I am still trying to work it out myself, but it does get a bit easier on a day to day basis. I am glad that you have gone straight into treatment and dont have to wait for things to happen - as we all know that just makes an awful situation worse.

I hope you are coping ok with the WBR.

love
cathy

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Hi Angie I was just so shocked to read your post as I’ve often seen postings from you on my “primary” threads. I am sorry, and hope that your treatment has a good effect - it makes me feel so vulnerable as things can change so quickly.

Good luck and lots of cyber good vibes xx

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Hi Angie

I am so shocked and so sorry that you find yourself here…and you are certainly not crashing. As an ‘oldie’ on the forums I always feel so sad and angry when someone like yourself who still seems a regular primary ‘newbie’ to me is suddenly thrown into their own shocking nightmare.

There are several women who use the secondaries forum who have brain mets and I hope they will reply to you with their expereinces. A while back there was a woman called KitKat who wrote an amazing diary of her experience with WBR and brain mets…I think it might be archived somewhere on here…Belinda do you know? Sadly Kitkat has died but she had some good time after her treatment.

You ask how we all manage? There is no simple answer. We are each in different places, with our diagnoses, our prognoses our treatments and then there are the differences amongst us through age, life experience and so it goes on. It is such early days for you and it will take a while for you to know how you will manage…but you will, one way or another…that is the strength of the human spirit

I hope the PARP trial (is it at the Marsden?) will hold some hope and possibility for you.

very best wishes

Jane

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Hi Angie, so so sorry to read your news, that must have been devastating and very scary to have happened like that out of the blue. I don’t have brain mets, but finding out that this disease has become incurable is such a terrible shock, suddenly we realise that we are not invincible anymore. I had my news just before Christmas, but am adjusting as best I can to my new prognosis.

I hope the treatments work for you, I am sure the other people in your situation will offer you lots of support, I am only sorry you need it.
Best wishes

Nikki

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Hi again Angie. As Jane mentioned we had a forum member here, KitKat, who had WBR and had a good quality of life after WBR. I remember she died of other complications…not from her brain mets…her husband posted here and I’m pretty sure it was pneumonia.
KitKat wrote her Brain Diary and I’ve managed to find it in the Archives. I think it will take a couple of postings to copy it all.
PLEASE don’t feel you have to read it!..it’s such early days for you but it’s here if you want to read it anytime.

Brain Diary Hi All
I’ve decided to impose on you all my lovely journey through brain mets as there didn’t seem anyone out there who’s done it recently/firsthand. Don’t want to scare, rather to reassure, so if you don’t want to read, stop now!

As you may know, saw the doc last week who confirmed brain mets. Hospital called Tues ( week later) for me to go in Thurs for mask and simulator for whole brain radiotherapy. Have to say, VERY impressed at speed of NHS here, also slightly scared that they felt it necessary to do it so quickly!

Mask was fine! I was worried I’d feel claustrophobic, but it was a bit like having a a warm string vest put over my face! It was only on for about 5 mins and then cooled down. Then they clip you down on the table, but the radio is only about 6 mins total, so I can do that! Easy! No tattoos as they draw on the mask!

She also showed me the MRI films and the mets were very small white spots. About 6 or 7 dotted around, but lower in the brain than I had thought. Not many in the top bit, and one a bit alarmingly near my optic nerve, but she reckons this radio will stop it inflicting any damage.

The radio will hopefully reduce them but, as usual, won’t get rid of them. Whether they recur is apparently dependent on what happens elsewhere in me, but as liver and bones seems stable for now, fingers crossed.
I start next Tues, 10 sessions over 2 weeks. Hair will go patchy and thin again, but it may not come back this time. Still, rather be here and bald, than hairy and not!

Feel so much better now its all going ahead and I can deal with it! Been working out driving rota and babysitting rota today.
Driving by the way, is off for the ‘forseeable’. basically if I ever want to drive again, the doc would need to fill in a form for the DVLA. Just going to have to get used to it, and use taxis and buses etc.

Was a bit concerned that this would in some way change me, my personality, but just going to have to try it and see. Surgery is not an option cos there are just too many.
Steroids seem to be stopping headaches and clumsiness, still a bit woozy but think thats the steroids themselves! Plus, they give me thrush so mouth back to cardboard and weight dropping off again. Mind you, I’ve got plenty to lose so no worries there!
Anyway, think thats all for now, let you know how its going next week.
Love Kitkat

Part 2.
Brain Diary Part 2 Hi Everyone,
I’m back! 4 whole brain radiotherapy treatments done, 6 to go and not feeling too bad!
It’s a very strange experience when you actually have the radiotherapy. When I’ve had it before on my boob and back, there is no smell, no lights just buzzes. This time there is a definite smell, kind of burning but not really, they call it ionising apparently, but my friend whose been driving me noticed it in the car! It also flashes a kind of blue light at the back of my eyes which has baffled them as its not supposed to! I think it must just be zapping a particular nerve in there somewhere! Its so quick though that I don’t have time to worry. I have to say that by the end of it, I’ll be glad to finish!
I’m feeling more weary today, and had a bit of a funny ear last night which is all down to swelling in my poor head. I do feel a bit like a bit of bacon! Hair still there, but scalp definitely feeling tingly kind of pre hair fall out feeling for those who’ve had chemo.
Anyway, will have a good sleepy weekend. My poor Mum has been away on holiday since all this kicked off and knows nothing about it, because I so wanted her to have a good holiday, so thats all about to hit the fan this evening. I hope she’ll forgive me.
Hope everyones doing ok
speak to you when I can
lots of love Kitkat

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Kit Kat’s posts continued…

A new bike for Christmas Hi all

wanted to tell you all about my early xmas pressie as I’m so excited and proud of myself!

I got a big shiny purple bike! With lots of comfortable padding and good suspension for my poor ole bones.
Been out with hubby and son and did 2 miles and felt really brilliant and alive! Fantastic, and its exercise and a bit of independence as I can’t drive.

Would definitely recommend it despite my mothers worries about my bone mets!

Loe Kitkat (exhausted but happy)

More Good News from me too! I wanted to share my good news too with everyone as sometimes we forget there is hope!
I’ve recently had CT scans on brain, abdomen, neck, pelvis and there is NO EVIDENCE OF METS !!! For those who don’t know I had liver mets and multiple brain mets (see profile) and am so overjoyed I can’t quite take it in. My onc said he was pleasantly surpised as he had expected there to be some activity!!!
I do still need to have bone scan as he thinks any cancer activity here might be the cause of my recent anaemia but I can deal with bone mets! Its not the bone mets that see you off is it.
Feel like the huge cloud I’ve carried around has been lifted, for a little while anyway.
So don’t give up, hope my news cheers you as much as it has me!
With love
Kitkat

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so very sorry to hear that you have brain mets - I am sure you were dx at about the same time as me about a year ago. I dont have any experience of brain mets myself but my sister who was dx 3 years ago got brain mets just before Christmas so I can imagine how devastated you are. She also has had rads (5 lots) and is doing ok at the minute but she does hve to have chemo for another recurrance in her chest. Her main problem has been the steriods she was given as they made her very swollen( the amount of food she ate didn’t help either). Anyway this is just so you know that you aren’t alone and we are all supporting you and hope that it is a verrrry long time before you need any more treatment. xx

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Still only a ‘newbie’ myself around here Vertangie, but have read lots of your very helpful posts to others, so I am sure you will now get the help and support you need for yourself.
With all good wishes,
Sass xx

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Angie hun, hope today went okay and you get lots of support from us and your secondaries post. Kit kat’s diary shows hope doesnt it - thanks belinda for posting that.

xx

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Hi Angie
I’ll second what Lisa has said. Glad there’s been some good and positive feedback from the secondaries bit. Hope yesterday went well, rest up and look after yourselves.
Hugs
Nicky xx

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Thanks for thinking of me ladies. We’re just still reeling at the moment as you’d expect. My Eyesights funny. nut that’s the dexamethasone I think. Not really sure what to do with myself to be honest, feeling a bit lost and hopeless, hope it passes soon.

Angie

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Hi Angie

I am so sorry to hear that you’ve had to join the secondaries gang. My heart goes out to you as I remember the horror of hearing my own mets diagnosis. It must have been terrifying ordeal for you being suddenly rushed into hospital too.

As others have said, there are postive stories out there (I’m a liver & lungs chick, so can’t help with brain), but for the moment I would suggest that you take one day at a time. It’s an immense thing to get your head around. My oncologists at the Marsden urged me not to start googling as we are all unique and are not statistics - nobody knows how we will respond to treatment, or whether we will be one of those who bucks the trend!

I found BCC’s Peer Support service really helpful - basically they match you up with someone who has had a similar diagnosis but who is further down the line in terms of treatment. That person will call you every few weeks to see how you’re doing, offer tips or reassurance and be a sympathetic ear. It was the first person I could really speak honestly to about my fears. About six months later I also set up some counselling at the hospital where I regularly bend some poor man’s ear - again, it’s very refreshing to have an open and honest dialogue as I come to terms with this.

In terms of the first week post diagnosis, I must confess that I necked some valium for the first few days (got dx with primary & mets in one hit last March) as I spiralled into the abyss. I felt like a dead woman walking. However, I did start to feel more postive once I’d gone past diagnostic stage and into treatment plan. I’d never have thought I’d see myself chomping at the bit to start chemo! I must say that once I started chemo I felt better both physically and pyschologically and started to come to terms with it.

Be kind to yourself, Angie - you’ve had a horrid shock on the back of a ghastly year. There is no right or wrong way to deal with this. You must be emotionally and physically exhausted now, so do rest up and keep warm. Take some sleeping tablets if you can’t sleep - you need to conserve your energy and have a break from all the things running through your mind, even if it is for 5 minutes!

Rooting for ya, girl!
Big hugs & love
xxx

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Hi Angie,
I too am very sorry that you have had to join us but a big welcome to the the ‘upper school’ of this sh.t disease.
I cannot help re the brain mets but I hope others will be able to give you plenty of support. I found kitkat’s diary very interesting and lovely to read I’m sure that will help while you are going through your treatments. Thank you to Belinda for printing that.
I am one of the ones that enjoyed your posts in the other threads so look forward to your contribution on secs.
How do we cope? Well we didn’t get a choice we have been shoved in this position like it or lump it. We can let it spoil what time we have left or make the best we can of it. I have found sad and happy are only one breath away(sometimes).
Good luck with your treatment and we will be here when you need us.

Love Debsxxx

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Hi Angie
Meant to have added this yesterday but the words weren’t coming out right!
It’s not surprising you don’t know what to do with yourself. Up until last weekend all main treatment had finished and presumably you were feeling OK. Suddenly everything has changed and you will be in shock. You now have to adjust to a new lot of treatment plus come to terms with what’s happening. It does take quite a while for that to all be taken in. I sat around for ages after my dx thinking ‘what’s the point?’ but once treatment was sorted I did pick myself up. We have all had to adjust to the new ‘normal’ and it takes some of us longer than others but trying to remain positive is something that helps me. Other things that have helped are being able to talk on here and generally doing ordinary things like going for a walk etc. I hope your treatment is not leaving you too exhausted and you are able to get out and get some fresh air plus build up your strength as much as you can (and you know how to do that).
Take care hunnybun - we’re all rooting for you.
Nicky xx

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Hi Angie

You obviously don’t know me but I have always read and enjoyed your very sensible and considered posts in the past.I have only just read about your new problems, due to this stupid website where you can’t see all the new threads at once and I came across yours totally by chance. I am SO sorry to hear what has happened to you and you must be in total shock. I know that so many people will be thinking of you and caring about you - me included. My very very best wishes to you.

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Hi Angie

Really sorry you’ve had to join us. I just wanted to say I’m thinking about you and good luck with the treatment.

Take care hun xxx