Apologies if this has been posted already, I looked, but couldn’t find anything.
I have secondaries in my bones, lung and liver which are being very well controlled with, currently, Avastin, Abraxane and Denosumab.
A recent MRI scan found I also have secondaries in my brain now, so I am in the middle of 10 sessions of whole head radiotherapy, with my rather fetching “Hannibal Lecter” mask! Silly me thought I would sail through it, but in fact, I have found it very tiring. I find the horrible buzzy head feeling and general brain scramble difficult to cope with, and I am constantly eating (I am assuming that is the Dexamethazone?)
Has anyone experienced similar, and could perhaps let me know when I will start to feel a bit more normal, please? I think I have been trying to overdo it a bit this week too, so I guess I need to give in and slow down?
Tomorrow is a busy day and I am not looking forward to it as I have the doctors first thing for a follow up blood pressure appointment, then the hospital at lunchtime for the chemo and stuff, followed by the radiotherapy!
Also, if you did have ths treatment, was it successful for you? I would like to think it is worth losing my hair for yet again!
Thanks in advance
Nicky
X
Hi Nicky,
My mum had whole head radiotherapy about 3 weeks ago now. She only had 5 sessions, not sure why it’s different for everyone seeing as we’ve been told you can only have this once?!?! But anyway, mum was very tired last week but slowly coming out of that now, with just odd sessions of it. It’s a long story re what’s happened to my mum but she too was on the maximum dose of those steroids and she too ate lots whilst on it but since coming off them her appetite has returned to its norm.
It’s too early to say if it’s worked, after an oncology appointment today she’s been told she’ll have a scan end of this month.
Sounds like you are going through lots of treatment so the tiredness will be quite extreme. The advice my mum was given was rest up when needeto and enjoy thebetter days.
Sorry I can’t be of much help but thought I should reply with what happens with my mum seeing as you lovely ladies have helped me out in the past.
Hope you are feeling more energetic soon.
Clare x
Hi Clare
Thank you for replying. It is funny how the treatments are for different amounts of time - as you say,they can only go there once!
It is good to know that the tiredness will ease nice it is finished - I am still working 3 days a week, but havea fallen behind so am stressing about catching up (all self inflicted - work are very understanding)
I am also glad to hear that my appetite will go back to normal - I am very bloated and uncomfortable at the moment, which is not very pleasant on top of everything else!
I hope that your Mum’s scan at the end of the month shows thahe the treatment did the trick for her
Nicky
Xx
Hi opal
I have brain mets but instead of WBR I had gamma knife. I found gamma knife very tiring and the side effects from the dex very difficult. For me it was quite a few weeks until I felt ‘normal’ again. I know of a number of women who have had WBR and I think that they would agree that it is not the easiest treatment to get through - you will get better but it takes a while and you need to be gentle with yourself.
As far as it working, although the doctors often get a bit negative when they find that you you have brain mets, lots of women seem to live for a long time after their diagnosis and treatment.
There is a very active thread on an American website
The thread is called ‘brain mets sisters’
There are quite a few uk women who post there. You might want to try registering and posting a messade on there. I found I got lots of replies, either with useful information or just friendly chat.
Cheers
Tillycat
Hi there, jus thought I’d let you know of a trial called quartz that is looking into the quality of life of those with WBR as opposed to other supportive forms of care - the doc running it is concerned that whislt WBR may be medically effective the impact can sometimes be too great for some people and supportive care might be more appropraite …may be of no help or interest but just in case - you should be able to find something about it on MRC website I think,
really best of luck to you
I have had a quick look - this trial seems to be for people with mets from lung cancer. It also mentions that people in the trial have a poor prognosis, unlikely to live more than a few weeks. All a bit depressing and possibly not terribly helpful for us breast cancer/ brain mets ladies. But thanks for mentioning it! 
Tillycatx
Thanks Nicky. I’m keeping my fingers crossed not only for my mum but all of you ladies here. I’m not really too sure what happens next in regards to treatment for mum. After getting her secondary diagnosis she had her first dose of docetaxel. She rapidly went down hill and was admitted to hospital where after ct and MRI scans was diagnosed not only with skull mets but hydrocephalus. They performed lumbar punctures on her and have since tested the fluid which surrounds the brain. Whilst the MRI showed no visiblegrowth in the soft tissues of the brain, they have found tiny cancer cells with in the fluid. They can’t be certain this caused the hydrochepalus but are assuming that’s the case. She had a brain shunt fitted to relieve the pressure and has improved significantly although not fully back to health. She was given 5 days of whole brain radio therapy and at this recent appointment they have decided to re scan her whole body to check for progression. If no further progression they will hold off the chemo and let mum continue with the aromasin tablets and re scan at a later date and givechemo when necessary but I’m not sure what they’ll do, if anything, should anything more show up in the brain. She is only taking the aromasin, along with a few other pills. Her original secondaries were the para aortic nodes, left under arm nodes, small nodule in the lung.
Clare x
sorry tillycat - didn’t realise that, , have a good day, Nicola
Not a problem, Nicola
When I looked again at my message I sounded very grumpy, sorry about that. I can be a bit of an old bat at times ! (I blame it on the brain mets, but in truth I think I may have always been that way)
Claire- hope you mum’s next scan is ok. It is entirely possible to improve while on aromasin or another AI, in fact i think they are sometimes better for CNS mets, it doesn’t have to be chemo.
Tillycat
Thank you Tillycat x