just diagnosed with brain and lung secondaries

Had a big old bad news week and still reeling from it all.

Had regional recurrence in september - nodal only, tried herceptin and vinorolbine (didn’t work), then tried lapatinib and capecitabine which I didn’t think was working as felt so so tired lately and just totally incapable of looking after kids as so knackered. been having dizzy spells past 3 weeks, then on sunday had a massive seizure - in hosp since and scans show 6 ‘deposits’ on my brain and some in the lung.

so so so scared about the future and can’t stop crying - don’t know what all this means and looking to you all for your knowledge and hope and comfort

starting whole brain radiation today for 10 zaps, then will start new chemo regime 2/3 weeks after rads finish

help anyone?

xxx

Oh Hannah I’m so sorry to read your bad news.
Good Luck with your rads. I will be thinking of you today.
A while ago a forum user called Kitkat posted her experience of brain rads. If you want to read her diaries I will post them here.
Kitkat sadly passed away many months later from other complications due to the disease and not in any way related to her brain mets. She had VERY succesful WBR results.
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

hi
just wanted to say how sorry i am to hear your news, i am sorry i cannot say anything about brain mets as mine is liver but want to send you a big hug
galen xx

Hi Hannah,

So sorry to hear your bad news. Just thought I would share a good news story about brain mets with you. My Mum has brain mets (she’s 74) and her experience was very similar to what Belinda posted about KitKat. The radiotherapy made her very tired indeed but afterwards there was no sign of her brain mets. She has been stable for a year now with no new signs or symptoms. She also has an inoperable tumour on her lung which responded to chemo and rads. She has a very good quality of life (much better than some others of her age) and the most visible sign of her illness is that she tires more easily than before.

I hope your treatment is kind to you and best wishes for a good outcome.

Jan xxx

Hi Hannah
Sorry to hear news. I too was dx brain mets(3 lots at bottom of brain) this january and have just had whole brain radiation finishing 4 wks ago. Have basically been extremely tired but try get up to achieve something everyday.Headaches were so bad before and now there is just alittle pressure but am on strong pain relief. Will go back in 3 mths for ct scan on head. Also have livers mets which had chemo for back in sept 09 they seem to be under control but have recently develpoved back pain so had bone scan yesterday. All fun and totally plop. I see you have a young child which like me i have 2 , 11yr & 13yr - its so hard but I just keep going for them and my family. Each day you just have to see how it goes and be kind to yourself and accept every offer of help and I no longer can drive, which is a little inconvenient.Just wishing lots luck with your WBR and hope it get the little beasts
Ginnie x

Oh Hannah11,

I am so sorry to read your news. I don’t have the same mets as you, but just wanted to say that lots of woman are coping with the spread of this disease, and doing lots of things we want to with our lives. I know when I first was told I was booking my funeral, but 16 months later I am still here, in fact still working (my choice)

I hope they get control really quickly for you and with minimal side effects

Hugs
Nikki

Hi Hannah

Just wanted to say how sorry I am to read your post. I hope that they manage to stabilise things for you and you can get on with your life as best you can.

It is hard with children and continuing the daily routines.

I too found it really hard when told at my dx that had already spread to my liver, but nearly 3 years on I think I am doing ok. My 3rd birthday coming up since my dx in July 07 and I never thought I would make one more birthday let alone 3.

Take care Hannah and hope your treatment/rads works wonders and things settle down.

Lots of love to you
Dawn
xxx

Hi Hannah
You must still be reeling from the news of your spread but I hope the rads really help you - as they have done for others on here. Keeping my fingers crossed that they are very successful and you aren’t too tired out from having them. Look after yourself and your little 'uns.
Take care
Nicky xx

thanks so much everyone for your comment

i’ve had my first day home after diagnosis and in hosp for 5 days and it’s been hard as I feel so incapable of even looking after my children, i’m so so tired from it all already and so scared about having another fit that I’m just so useless now

not coping well at all with this news, feel so hopeless

previously whenever I’ve had bad news, i’ve sorted things out in my head and got on with it and have always had a really strong approach and kept things as normal as possible but this is just too much

I’ve been on chemo since sep and then it was only in my nodes (and one lung nodule) and since then it’s spread to loads of tumours in both lungs and 6 mets in brain and it’s just too powerful for anything we’ve got and so what’s the point in trying - the whole thing is just too scary and probably won’t work anyway - I really don’t think I can do it anymore

I just want to be a mummy and I’m not even going to have the energy to do that, I can’ drive now, I can’t play with them, I can’t even laugh today

sorry - bad day

xxx

Hannah

I am so so sorry at your news and have tears in my eyes writing this.

I only have primary BC so can’t advise but wish you well with all the treatments.

Love
MNC
xxxxx

Hi
I am so sorry to hear of your news and no words i will say will make you feel better i am sure.
I can tell you about the mask that you will wear when having treatment. I had secondaries in my neck at the back so i was fitted with a mask to have rads. It is not as bad as it sounds. You go and have a fitting…they then make it and you then go back to make sure it fits OK. The mask it marked out so they know were the traetment goes. When you go for the traetemt itself you are cliped in. To be honest it was OK as treatment goes…no pain just a little uncomfortable. I have been clear for 3 years now from secondaries but know it will return at some point. I wish you luck with this treatment and my thoughts are with you.
Lots of Hugs XXXXXXX

Hi Hannah

Just wanted to say how sorry I was to read your post. It’s so understandable that you feel your situation is hopeless and I am sure this is adding to your fatigue, but I very much hope that the WBR and chemo will work well for you and that you will regain your spirit of hope, and your energy.

Thinking of you
Linda

Hi Hannah

This is such a difficult situation and our thoughts and hopes are with you and your family. I can see that you have received valuable support and information from your fellow forum members and know that you will continue to do so.

You may feel that the support you are getting here is enough but if you feel that you need more support there are other sources of help. You could call our helpline – often, talking through your feelings can be a help and clarify your feelings, or you may prefer to contact a MacMillan nurse or your breast care nurse. Your care team can also put you in contact with a counsellor if you feel more in depth help would be useful in coping with this diagnosis and the treatment options you have been given.

We also have the secondary live chat sessions, which run every Tuesday evening from 8.30 to 9.30pm and Wednesday 11.30am to 12.30pm. Here you talk to other’s with a secondary diagnosis, in real time on line.

You can contact MacMillan Cancer care on 0808 808 2020 our Breast Cancer Care helpline is on 0808 800 6000.

We hope this is of some help to you Hannah.

Kind regards
Sam (BCC Facilitator)

Oh Hannah,
Im so very sorry to hear of your news, this desease is so cruel and unfair, i very much hope that your new treatment plan works well for you and that you will start to see a good response very soon, i just wanted to send you a massive hug and to let you know i am thinking of you .
Lots of love to you Linda x