just been told i have 5 mets in brain nothing there 5 weeks ago!! im 31 scared stiff and i just sick of it all but want to get all the treatment i can cause i love my life and i just cant believe im getting such a bad hand!
I take it there is no real hope just looking at replies??? Do we only have rads or steriods to go with cause the Dex steriods side effects are terrible! And ive only just been reduced to 1mg and now im back up to 16mg with a fat red spotty hairy face and weak legs!
Do i have to hand my drivers licence in?
Is anyone aware of any trials??
Chemos??
Im now so worried that i dont know what to think and we dont seem to get alot of info about it!
Please anywords of encouragement or things you think i should ask my oncologist friday would be helpful.
I cant believe my life is turning out this way i want spend the next 40 years with my family i dont care about money or possessions i know whats important i dont wana die before im 33 i havent lived for petes sake…sorry know we’re in same boat just i dont say owt normally.
Please do feel free to call the helpline for more support and to talk through some of the issues you have mentioned on 0808 800 6000, it’s open weekdays 9am-5pm and Sat 9am-2pm.
Sorry to hear your diagnosis.
Not sure about handing in drivers’ licence with brain mets from bc, but when my late twin brother was diagnosed with an inoperable very large secondary brain tumour from small cell lung cancer (primary never found even after extensive whole body scans), his Oncologist said that by law, he had to inform the DVLA immediately, and his licence was taken away. As if you haven’t enough to do deal with - they should provide a volunteer car service!
The US based inflammatoy breast cancer site has a number of women who have brain mets and they may know of newer drugs than we have here. It is a bona fide registered charity, so the moderators here should allow the website URL through: think it is <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%69%62%63%40%69%62%63%2e%73%75%70%70%6f%72%74%2e%6f%72%67%22%3e%69%62%63%40%69%62%63%2e%73%75%70%70%6f%72%74%2e%6f%72%67%3c%2f%61%3e%27%29%3b’))</script> - if not you can google ibc to find it. The ladies there are very articulate and knowledgeable, as well as being tremendously supportive.
Take care,
Liz.
Hi Lynn, I’m sorry to hear your news. You might like to find out if gamma knife is an option. A couple of friends were able to have it and it seems to be less tiring than whole brain rads. It’s not always an option, think it depends on where and how many mets you have. It’s available on the NHS…I know the Sheffield Hospital offers it. You Take Care Lynn…Belinda…xx
So sorry to hear your news, and yes you had had a bad run of things recently. I read your thread on GobbyGang (hopefully it is you that posts there), and wish there was something I could say to help u.
Sending you lots of love and hugs, and hope u find some treatment that helps to give you a longer life. It is so s**t all this and having to go through this at any age is bad, but when you are so young it stinks (I am just 40, but feel far to young to have my life end yet).
Sorry to hear your news. I had Gamma Knife earlier this year, I think there are 3 hospitals offering this 2 in London and 1 in Sheffield. I didn’t want WBR because of the side effects and I went for a 2nd opinion about Gamma Knife. I also had a craniotomy beforehand and I had chemotherapy afterwards. My latest scan showed that the tumours on my brain (3) have reduced by half in size so I’m pleased about that. I agree the steroids are horrible but I did get off them eventually and hope you will too.
Hi Lynn
just wanted to say I’m really sorry to hear about your dx.
I think there is a newish chemo called Tykerb I don’t know much about it but I do know it can pass blood brain barrier.
What else can I say I’m another tired and fed up of it all lady today some days I feel better than others. Don’t say sorry for telling us how you feel you say what you want when you want if it helps any.
I’m a Lynn too, and have 3 brain mets diagnosed in February. Inoperable, but controlled by 1mg Dex a day after 5 doses of whole brain radiation. When I was 1st diagnosed they weren’t sure I was going to make it - lots of concerned looking relatives rushing to my bedside!
6 months later I’m feeling much better and things do seem to be under control.Besides the Dex, I take omeprazole for stomach problems caused by previous chemos, Herceptin intravenously every 3 weeks, and I’m now on Xeloda (oral chemo) for the inflammatory breast cancer which has reappeared, but is responding well to treatment. The Dex and Xeloda side effects are irritating, but manageable.
On a practical note:
Yes, you do have to surrender your driving licence. This is a pain, but I certainly wouldn’t want to drive in my condition. On the plus side, I applied for disability living allowance, and got the higher rate with mobility component. This has also meant that my husband can get Carers Allowance & I have a free bus pass, and disabled blue badge for the car. My Macmillan nurse filled in the Disability Living Allowance forms for for me, which was a big help, and it came through in just a couple of weeks.
I’ve also been able to claim on my Terminal Illness insurance. If you are covered for terminal or critical illness, ask your Onc if your condition is considered to be either of these. It feels very strange to apply for this, but the money is very useful!
Brain mets can be very scary, but I’m starting to get used to them, and so relieved that I seem to have recovered from the worst of the muscle wasting - having to be helped out of sofas or out of the bath is not dignified!
i want spend the next 40 years with my family i dont care about money or possessions i know whats important i dont wana die before im 33 i havent lived for petes sake…sorry know we’re in same boat just i dont say owt normally.