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Diagnosed with Brain mets

43 REPLIES 43
Guest user
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Re: Diagnosed with Brain mets

Hi, I'm 14 days post WBR and making slow progress. Still very tired, nausea much better. I dont snooze in the afternoon but certainly enjoya lay on the sofa.

Weaning off the steroids cant be elping either!

Not sure where the side effects end and the symptoms begin???

Enjoy the wedding!

Ruth x

Guest user
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Re: Diagnosed with Brain mets

HI all
Finally, 3 weeks post RT I am beginning to feel better. I've been out on my bike and doing more at home although I do still snooze severl times a day. My red forehead has calmed down which is goo as we have awedding to go to this weekend and it would not have been a good look. I'm detremined to enjoy the wedding and have a strategy for a power snooze mid afternoon so that I don't fade too early!
How is everyone else coping?
Louise

Guest user
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Re: Diagnosed with Brain mets

Sending love and hugs. I often think of you.

Ruth x

Guest user
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Re: Diagnosed with Brain mets

Hi Ruth, thanks for asking how I am doing. I know its a big learning curve for my partner and he is really struggling. Im sure he is convinced Im going to have a complete character transformation.
We are both going to as I am sleepy at the moment xx

Guest user
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Re: Diagnosed with Brain mets

Hi,

Just wondered how you are Ann B?

Ruth x

Guest user
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Re: Diagnosed with Brain mets

Hi Louise,

I must be about 2 days behind you!!

I feel tired and wobbly all the time. They say it can take a few weeks/ months to recovery. Apparently the radio really exacerates the symptoms. I am finding it very frustrating, as I want to get on and squeeze every last drop out of life.

Do you find that if you have a good day , you tend to overdo it and then feel really tired the next day?

Take care
ruth

Guest user
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Re: Diagnosed with Brain mets

Hi all
Sorry Ruth you have had to join us but welcome.
I finished my WBRT 12 days ago and am still suffering from really chronic fatigue - more brain tired than physical. i find myself power snoozing 3-4 times a day. But am still able to get out and about inbetween. Lost all my hair and have a very very itchy red forehead and dry patches that are sore behind my ears. However considering I have also done 2 cycles of capecitebane during all this, I think I'm doing ok. Hopefully things will start to improve over the next few weeks.
I'm very glad that I decided this time to take the steroids and antisickness right from the start and it really helped me keep my appetite.
Thinking of you all
Louise

sarah68
Member

Re: Diagnosed with Brain mets

Hi Ruth,

I can't imagine how you feel with this new dx. Wishing you strength and courage.

All the best, Sarahxx

Guest user
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Re: Diagnosed with Brain mets

Hi,

Thanks for the link to this thread which, if I may join. I was diagnosed Nov 2004 (34 yrs) and told on 14th Feb this year that it is in my brain and lungs. All very small, apparently. Just finished WBR and about to start tablet chemo (Xeleda???).

See my oncologist tomorrow, not sure whether to ask about pronosis regards time. Horrible isnt it?

Its all a big pile of poo!!

On a good day I feel like 'rebel fighter' on a bad day the whole world is black.

Ruth

JulieD
Community Champion

Re: Diagnosed with Brain mets

zippy and louise,
Good luck with the treatment, hope all goes well and se's not too bad / controlled. Thinking of you both and sending good vibes your way.
love Julie x

Guest user
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Re: Diagnosed with Brain mets

Hi all
Tahnks for kind words
Zippy, I start WBRT thursday so we must swop notes. I've got some steroids and antisickness ready because I suffered quite badly with headaches and nausea. At least I know what to expect.
Best of luck
Louise

Guest user
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Re: Diagnosed with Brain mets

Zippy - good luck with your treatment, I will be thinking of you and hoping it is not too much of an ordeal.

Ann - good to hear from you and it's good to hear you sounding so positive, I'm glad you are happy with your wig - that's one battle won!

Louise sorry to hear about your new mets, just hope that you treatment gets started asap.

Love to you all

Nicola xx

Guest user
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Re: Diagnosed with Brain mets

Hi Zippy,glad you have your wbr dates and the treatment will soon be over.

My own hair has just started to fall out today but by wig looks great so other than getting used to the handfulls of hair thats not too much of a problem.

Best of luck Ann B xxxxxx

Guest user
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Re: Diagnosed with Brain mets

Hi

Got my wbr dates, start next week.

just want to get it over and done with now!

But feeling ok and happy 🙂

Guest user
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Re: Diagnosed with Brain mets

hi

thnku for your messages!

sorry to hear louise about the additional mets, i didnt know they only did part of the brain i thought it was wbr or gamma so interested to hear tht they only did part of your brain.

well i hope theyl wbr the other ones asap.

everyone enjoy your weekend 🙂

take care xxx

Guest user
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Re: Diagnosed with Brain mets

Hi Louise

I am on Capecitabine and finding it okay in comparison to previous chemo's and I read somewhere that it is noe of the ones that crosses the blood brain barrier (I think, better check but I am sure someone on here said that!) So far the Capectabine is working on my tumours so I hope it does for you. I am having Vinorelbine as well on day 1 and day 8. I have always been given two drugs (combination) for each course of chemo I have had my Onc is of the opinion that it is more effective. Maybe ask about that on Monday.

Still thinking of you and sending hugs () Sue x

Guest user
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Re: Diagnosed with Brain mets

Hi all,
I unfortunately found out yesterday that I have new brain mets in the part of the brain they didn't zap last Nov with RT. It was always a risk not doing WBRT but one I was willing to take. Now it seems they have popped up. No plan yet - see doc on Monday. This on top of progression in liver and lungs is not good and I started on capecitabaine this morning. Thinking of you all
Louise

nicky08
Community Champion

Re: Diagnosed with Brain mets

Good news Zippy. As you say, thank goodness they did the CT scan in the first place. Hope the WBR goes well and you're back on your fighting toes asap 🙂 Have a good weekend.
Nicky

belinda
Member

Re: Diagnosed with Brain mets

Hi Zippy, great to hear from you. I just wanted to wish all the best with the WBR and I hope you are back on the chemo track soon. Take Care, Belinda..xx

Guest user
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Re: Diagnosed with Brain mets

Hello

Well after a stressful week - i saw my onc and got some answers to my many questions and feel SOOOO much better.

Yep still have brain mets. But from somehow imagin i had 17! mets and my brain was full of tumour, i actually only have 4-5 with the biggest at 1.5cm the other few are tinyier, so in terms of size they are weeny. And it seems are not near vital areas and why i luckily do not (and hope not) have symptoms.

so after imaginin the absolute worst - yep its not great - but it couldv been far worse. im fortunate they ct scanned my head, as i fainted/collapsed from bein neutropenic from chemo - but scannd me to check my head as they couldn rule out fittin or injury in the fall to my head. thank goodness they did. As without symptoms idv mayve not known until it was too late.

i am due to start WBR next week for 5 days then back on chemo taxotere 4 weeks after for the liver tumours all being well.

so all in all, i am feeling much better now, and take each day as it comes, whatl be will be. No point worrying about it, ive been fightin breast cancer for 8 years now and with these latest tumours ive now had over 20 or so tumours, in breast, lungs, spine, liver and now brain so its just another blip. 🙂 I love my life and im gonna continue to enjoy it! 🙂

belinda
Member

Re: Diagnosed with Brain mets

Oh Zippy I am sorry to hear of your diagnosis..I hope you can find some comfort from reading here..Best Wishes to all.
Belinda..xxxx

Guest user
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Re: Diagnosed with Brain mets

hi diagnsd yestrdy with brain mets, seein doc today xx

Guest user
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Re: Diagnosed with Brain mets

Hi everyone

I have just joined tonight because we found out today that my Mum now has brain mets. After almost five years of being 'clear' of breast cancer, she was diagnosed 18 months ago with mets to bones, lung and liver. After chemotherapy, she was doing really well. The ironic thing is that her lung and liver are still looking really good and the tumour level in her blood is very low.

I've been reading about gamma knife treatment. Mum has three brain lesions - how would we know if she was eligible for the gamma knife?

Thanks very much,
Deborah

Guest user
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Re: Diagnosed with Brain mets

Hello Ann

Just catching up on the forums after three weeks away. So sorry to hear of your diagnosis, cannot begin to imagine how devastating it is for you. But I sense a glimmer of hope from your recent meeting with your onc so I do hope that you get at least the couple of years you mentioned. Sorry if this sounds trite, words just can't come out right sometimes can they?

Best love,
Alison xx

Guest user
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Re: Diagnosed with Brain mets

Oh I hope so Ann!

That does sound encouraging. We all realise that there won't be a cure for most of us, but we can't ever have our hope taken away.

Here's to those extra years!

Nicola xx

Guest user
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Re: Diagnosed with Brain mets

Hi everyone and thank you all for your experiences.

I have my hospital treatment at Macclesfield General Hospital and cannot praise them enough for the care and time they have given me over the years.

The oncologist I see at Macc is also based at The Christie Hospital and she said she as had another oncoligist at the Christie and also another one from the Royal Marsden and the have all beenmusing over my scan for the last 3 days. I have multiple areas, verthinly spread like icing sugar that is almost invisable and really did take some spotting.

I asked once this 5 days of radiotherapy finished was that going to be it and she said oh no we still have some surprises up our sleeves for you yet, so maybe having more the extra views have added more to my treatment than I was originally given, I know its not a cure but a couple of years would make the world of difference.

Heres hoping, cheers again Ann B xxx

Guest user
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Re: Diagnosed with Brain mets

Hi Ann

I was diagnosed with brain mets almost 3 years ago and am still here. I have had a few recurrences since then and in Dec 2009 a neurosurgeon told me most people with brain mets don't live beyond a year ( even though I didn't ask him!) I am on constant chemotherapy but have managed holidays and am generally well. This must be very scary for you but lots of people outlive the prognosis and my WBR was ok I just felt really tired for a couple of months.

Take care, Gemini.

Guest user
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Re: Diagnosed with Brain mets

Hiya, just wanted to lend you some support - i got BC 5 years ago when i was 38, had a mastectomy and chemo and radiotherapy at that time. Was fine for about 3 years then got secondaries in the liver, lung, hips, and spine. Had further chemo for that and was fine for about a year, then i was hit with brain mets just last August. I had 10 sessions of radiotherapy to my brain but havent had any follow up scans so im not really sure what the position is. My liver also started playing up again just after brain diagnosis - I am on xeloda for that just now and it seems to be keeping the liver stable for now. My oncologist has not told me how long I have, nor did I ask her, I am too scared, but she did ask if I had my affairs in order so Im assuming it might not be that long. In saying that tho, I am feeling well, eating well, and managing to work. Its very hard living with this, when it goes to your brain that is pretty much it I think, its just a question of time....

Please try not to dwell on how long you have, try and keep a positive attitude and make the most of what time you do have, you never know you or I could be a statistic that goes against the odds, why not ??

Also, if your feeling well take a walk every day, I have two dogs to walk and I honestly feel better for it, this cold wintry weather fairly clears your head.

Good luck, Jackie XX

Guest user
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Re: Diagnosed with Brain mets

Hi everyone and so much for all your good wishes which must be working as I have a strange strength of serenity since my diagnosis which is not usually like me, Im normally haywire.

Im trying to hold on to the feeling as long as I can and can feel the good vies I am receiving (even had a text from the top of the Himalyaus
this morning

Keep positive with all your treatments girls

lots of love Ann B xxxxx

Guest user
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Re: Diagnosed with Brain mets

Hi AnnB,
When I was diagnosed with 3 brain mets in February 2008 I wasn't expected to make it out of hospital. But I'm still here and feeling preyyt good 3 years later. I had steroids and whole brain radiation initially, and capcitebine for a recurrence of Inflammatory Breast Cancer a few months later. My January scans show no active cancer. Just because you are statistically likely to die doesn't mean you necessarily will.
Best of luck and all my love, Lynn

Guest user
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Re: Diagnosed with Brain mets

Hi Ann
I am so sorry to hear your recent diagnosis and understand your fear. If you've read the other brain mets treads you'll know that I had a single brain met diagnoses June 09, removed and then a recurrence Sept 10. That was also removed and I had RT too. Like Twinmummy, I found that really hard work but have been assured that it is very effective. I asked my onc back in June 09 how long and he said he hoped 2 years. Well, 18 months later, I don't have any brain problems although my liver and bones are not playing ball at the moment. I know a lot depends on where your mets are and the effect they will have on brain function, however the treatments are good and effective. Bt almeans ask more questions, knowledge always helps me to cope.
take care
Louise

Guest user
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Re: Diagnosed with Brain mets

Just wanted to add my personal hug.
I can't imagine the breadth of the impact upon you.
I hope you can feel some of the support and hope offered here by other women in similar situations.

Just wanted to hold your hand tonight and squeeze it tight.
Bless you Ann.
You are in my thoughts and my prayers.

Welshgirl xx

Guest user
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Re: Diagnosed with Brain mets

Hi Ann
I'm sorry to hear your news and the short prognosis you have been given. Brain mets are scary - I too was diagnosed on New Years Eve with 3 mets in back of brain affecting vision, plus speckles elsewhere. It was a huge blow. I also have mets in liver bones and lungs which had been responding reasonably well to docetaxol.

I started 10 treatments of whole brain radiotherapy on 10th January which I have to say I found extremely difficult - headaches, tiredness and nausea though steroids eventually helped -I should have been onthem before I even started but wasn't given them till day 2 - do ask about them for you. I also ended up in Hospital for 3 days but fortunately got sorted out there, am home and am definitely regaining some strength now and feeling more positive. We are of course all different so please don't expect same thing to happen to you - I hope you tolerate it well and that it works quickly. My onc,because I asked him, said my life expectancy was up to a year and of course I do hope to exceed that and that you and many others onhere do too. I'm thinking of you alltonight and hope you are sleeping peacefully - my brain's in overgear tonight so catching up on the computer.
x

belinda
Member

Re: Diagnosed with Brain mets

Hello again..Kitkat's diaries.
Kitkat sadly passed away many months after her WBR from other complications due to the disease that were not, I believe, in anyway related to her brain mets. She had very succesful WBR results.
Wishing you all the best results possible Ann.
Lots of Love, Belinda..xx

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

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

2nd part of Kitkat's brain diaries....

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

nicky08
Community Champion

Re: Diagnosed with Brain mets

Thanks Belinda - you may need to as my 'posting a link' hasn't worked. I do know that the thread is in the Living with Secondary BC section under 'are brain mets more serious?' topic
Good Luck, again, Ann
xx

belinda
Member

Re: Diagnosed with Brain mets

Posted same time as Nicky! ..if you can't find Kitkat's diary Nicky I'll post it here in a little while..x

belinda
Member

Re: Diagnosed with Brain mets

I'm so very sorry to hear your news Ann. I had 2 friends who outlived their prognosis. One friend lived for nearly 2 years..I think she had 10 sessions of WBR. Another friend lived for about the same time. I don't know how many WBR sessions she had but I do know she had some good quality time during those 2 years.
Am sending you PM..Good Luck and Love..Belinda..xx

nicky08
Community Champion

Re: Diagnosed with Brain mets

Hi Ann
I am so sorry to hear this devastating news and I do hope there is some positive results with whatever treatment you are offered. There have been several threads on here recently about brain mets and I know Belinda has posted a diary extract from a previous forum member, KitKat, who 'talked' about her brain mets treatment. If I can fish out the thread I'll post it on here, but I don't think it's beyond page 1 or 2 of Latest Posts. Wishing you all the best
Nicky x

jacqui37
Member

Re: Diagnosed with Brain mets

Hello Ann
I am so sorry to hear your news and can only imagine how devastated you must feel.
My Mum had a Glyblastoma grade 4 primary brain tumour (not mets) and although initially given a very short prognosis went on to enjoy 14 months with us with the help of radiotherapy and large doses of steroids. I have absolutely no idea how similar primary tumours and mets may be, and I am sure that the location makes a difference, but I just wanted to pass on what may be a small hopeful note.
I am sending you hugs and best wishes.
Jacqui

JulieD
Community Champion

Re: Diagnosed with Brain mets

Dear Ann,
I am so sorry, you must be absolutely devestated! I can't help from personal experience but I know from the forums that people can have successful results from things like WBR and go on to live for much more than a couple of months. Hopefully one of those women wil notice your post and be able to give you some answers.
Thinking of you and hope you get some answers which might give you some hope amd comfort soon,
with love and hugs, Juliex

Guest user
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Re: Diagnosed with Brain mets

Ann thinking of you! Have sent you a PM on facebook.

Look after yourself xx

Ruby1
Member

Re: Diagnosed with Brain mets

Dear Ann
What devastating news and I'm sure others will come along who unfortunately have experience of this. I have read of quite a few ladies who've had treatment for this and are doing well. Thinking of you and hope that the treatment will give you relief.
Hugs
Ruby xx

Jo_BCC
Member

Re: Diagnosed with Brain mets

Hello Ann,

So sorry to hear of your diagnosis. Please do give the helpline a call for some extra support at this time, I'm sure they'll be able to give you some information regarding WBR.

Take care,
Jo, Facilitator

Guest user
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Diagnosed with Brain mets

Hi everyone, I had an mri scan following what appeared as a stroke but didnt show at signs on .ct scan The mri came back with brain mets and poss diagnosis of a couple of months.

I am obviously devastated but wondered if anyone else has been given a short diagnosis and gone on to live longer?

Two months wouldnt give me time to sort out even my shoe cupboard let alone put my life in order.

Can anyone also give me experiences of WBR.

Many thanks AnnB xxxxxx