In my brain

Hi everyone. Some of you may remember me, I’ve been around for a while (04) Just been diagnosed with brain mets, I’m devastated. I was doing so well on Herceptin although I’ve only recently been told Herceptin doesn’t reach the brain???. I’m at rock bottom at the moment and desperate to hang on to something. The tumor was operable and has been removed (half inch) and I’m about to start on full head radio therapy so I guess that’s something I suppose. Is there anyone out there that has or is going through something similar. Desperate to hear from you.

Hi PaulaD

Sorry to hear your news. Not been through the same as you, although got liver mets, and was dx with them 10 days after being told had bc, so all in one go. Sure you will get others responding that have been through what you are going through or at the same stage, and that they can help you with questions etc.

The good news is that it was operable and has been removed, so keep remembering that and be strong and positive and radiotherapy is supposed to be excellent.

Hope you get on OK and let us know how you are. Thinking of you and sending lots of love and cyberhugs. Sorry can’t be of much help though.

Take care
Love
Dawn
xx

Hello Paula, so sorry to hear your news. I have mets to bones but know friends who have had whole brain rads who are now doing well. There are some good posts on this forum by a lady called KitKat, you can find them by going into (advanced) search, she posted a diary throughout her brain rads treatment.
Good Luck Paula, thinking of you, Belinda.x.x

Hi Paula

So sorry to hear such horrid news. I do know exactly what it feels like, I was dx with brain mets last June. I didn’t have any surgery as I had lots of little small ones but did have WBR and am here a year later with 4 clear scans to tell the tale.
Not sure what you want to know but just ask, I’m happy to try and help.
I really though it was the end for me and was so afraid it would change me. It didn’t and I continue to live in hope all the time.
Let me know any more questions, hang on in there and take each day as it comes,
best wishes
kitkat

Hi Paula,

I too am sorry to hear your news. I was diagnosed with brain mets in June, they were very small and couldn’t be measured. I had WBR even going in on my birthday !!! Last week I was given the results of my recent scans and was told that I showed little or no evidence of any cancer. My blood tests and tumour markers were great. It was a fantastic feeling. Keep going there are plenty of people to support you here.

Diane xx

Thank-you both so very much. There are lots of questions I want to ask, I’m very grateful I have found someone who understands. I have to have a bit of a break tonight so you may not hear from me till tomorrow, I’'m on steroids and I hate it. I will rest and speak to you tomorrow. Thank-you.

Paula.

Hi Paula

I am sorry to read that you have been diagnosed with brain mets but I am pleased to see that you have already received several supportive and informative posts from other users.

You may also be interested to know that Breast Cancer Care produces a factsheet which offers further information on symptoms and treatments - I have given the link here:

breastcancercare.org.uk/docs/secondary_breast_cancer_in_the_brain_0.pdf

You can either download the factsheet or order a copy from this site.

Kind regards.

Katie
Moderator
Breast Cancer Care

Thankyou moderator.

hi paula i was diagnosed with brain mets last june 06, like you it was operable after op i had WBR

you are the only other person who i have heard of having surgery

i had a mri in jan and again in july they were both clear

my hair has not returned completly still a bit baldy on top (due to WBR)

but thats a small price to pay

the worst thing is worrying it just doesnt seem to stop but thats just one of the awful side effects of this disease

i think i had 10 sessions of radiotherpy

hope all goes well xx northerngirl

Terri, I would like to thank-you for the information you gave me, I would really like to talk with you but I’m exhausted, just got back from Herceptin and I’m on steroids but I can’t wait to hear more, maybe we could work on this together? I have been devastated since being given the news, then I had a meeting with one of my oncs. yesterday and he said a few ‘unexpected’ interesting things, but then having read what you have said I’m already beginning to doubt him. I have always remained a realist throughout this journey and have been astounded at some of the things my oncologists have, or, have not told me. Why did they not operate on your first diagnosis? Did it reappear in the same place? Did it reappear again later on after a clear scan? Look forward to speaking to you soon, I’m back on a mission! Thankyou.

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Northerngirl
I’m trying to reply to you but my post doesn’t seem to be going up, I will try again after tea.

Hi,

Just read these posts and have found them interesting as I also have brain mets. I was told not operable but have had whole brain radiation. I was wondering if your hair grows back as after two months still bald. I was also told prognosis for brain mets is difficult and between 6 months and two years. Now reading these posts I feel more positive and feel that maybe they do not know everything.

I do wonder those of you with mets are you still feeling fatigue and do muscles ache? As this is what I find most difficult as I felt ok until a few weeks ago and then came down with above symptoms.

Do any of you know if you get your driving licence back? Sorry so many things seem to happen when you have brain mets.

Tracey xx

Hi Tracey

Sorry about your brain mets. I was talking to a girl yesterday at my hospital, her mets was inoperable three years ago and she is still okay. I think the WHRT treatment is making a big difference. I start mine on October 1st. My Onc told me the other day, it was highly unlikely the brain mets will return, certainly not in the same place. I can’t possibly bring myself to believe this although I wish I could. My husband was with me at the time, so I wasn’t imagining it.
I have heard back from a few girls on here, Northerngirl, Kitkat & TerriLynn, all of them I would like to talk to but don’t seem to be getting any response.
As for the driving licence, I only know that the law say’s ‘two years’, that doesn’t mean that in two years they will just hand it back, your condition will be re-assessed.
I was told by my breast care nurse that my hair will start growing back a couple of months after treatment.
i don’t believe anyone is in a position to give a positive prognosis so I try not to think about it, I am searching for a chemo trial that reaches the brain, as I have already mentioned, I fought for Herceptin before it surfaced in the media and wouldn’t be on it now if I hadn’t. Herceptin doesn’t reach the brain unfortunately so I will search for something that does.
I hope I hear more from you and you don’t disappear like the others. Lots of love, Paula.

hope these answer some of your questions treakle

i have just been told, a year since WBR the rest of my hair will probably not grow back it is still very thin on the top towards the back

also i phoned the DVLA up as i hadnt surrendered my licence i just stopped driving

they send out a form to fill in and they get in touch with your doctor i think if you have had clear scans

you can drive again with your licence being reviewed after a set time

i am very achy across my shoulders and back been going to an osteopath not much improvement so far

i did have my cervical area scanned whilst having a mri for my brain it only showed wear and tear

thats age for you although i felt 48 was still not too bad

my onc never mentions prognosis as he says no one knows just be positive

Hi Northergirl

I have asked you a few questions over the past two days but don’t seem to be getting a response. You mentioned that I was the only other person you had come across who had been operated on. Did you read about what my onc said, about it not returning in the same place once it had been removed, and in his experience, it doesn’t return again in the brain. I’m finding it hard to get my head around that kind of information, as much as I would like to believe him, it just doesn’t seem true. He said it will undoubtadly come back in another part of my body but at the moment I’m still all clear due to Herceptin, so I am trying to be as positive as I an be. Because it has been removed I am trying to give myself the 'all clear for now", if you now what I mean. How do you feel about having been lucky enough to have it removed and are you able to ask your onc any similar questions?

Well loads of positive comments from Onc etc, I will have to see what mine says this week!! I have a few questions I now want some sort of answers to.

Keep posting girls

Love Trakle xxx

Hi northergirl

Ive tried the whisper method but it doesn’t seem to work. I would love to know more about your diagnosis. I feel lucky that they could remove it and that everywhere else is clear due to the herceptin but I just want to be on my guard. It would be interesting to know how your onc reacts to my oncs suggestion that in his experience it doesn’t come back again in the same place as it was removed.
Im also eager to find out if there are any trials going at the moment for Lapatinib (Tykerb) a tablet form chemo that reaches the brain and not yet available in this country.
How do you feel after your WHRT? Do you have re-recurrence anywhere else?

Paula

Hi Paula
I know a little about Tykerb so thought I’d contact you.
It’s produced by Glaxo Smithkline Beecham and is not available in the UK yet. There may be some trials beginning - try googling Mount Vernon - trials or just trials as this brings up various websites showing what trials are going on and where. In the meantime I know somebody who got Tykerb abroad - it’s very expensive but you can get it in America, Switzerland and Israel. Your oncologist would have to give you a prescription.
Very best of luck
RebzAmy

I attend Mount Vernon and I am seeing my Onc so I may well ask about this. See what he says.

I too am attending Mount Vernon at the moment for my Tax and herceptin - we may have the same oncologist - the rest of my herceptin and operation will be at Barnet. If we do have the same oncologist he has a patient who is getting Tykerb from abroad. From what I understand there will be trials of Tykerb at Mount Vernon but I don’t think they have begun yet. Please let me know how you get on.
Best wishes
R