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Nearly 4 years in and brain mets. Please help

Member

Re: Nearly 4 years in and brain mets. Please help

Moijan, Carolyn & Zena, I've just caught up on all the posts & am in fits of giggles! 😂😂😂 Methinks Charys is intrigued, teehee. 

 

Marnster, thanks for updating us re the neurosurgeon's concerns & plans for your treatment. Glad he's taking your post op mobility into consideration. You definitely sound confident with his advice. Now, that's what I call a world tour! 😃 Don't bother to come here for a white Christmas. USA is much better for that. We hardly get snow in London & when we do, it's a light dusting that stops all the traffic & public transport & is washed away by the rain the following morning. I still love it though so feel free to see visit this lovely city (my biased opinion). 😍 I'm right here & haven't spent nearly enough time in Europe. Shameful, haha!  

Member

Re: Nearly 4 years in and brain mets. Please help

Yea so funny .. swearday - like winesday ... gonna call you mo-jo from now on moijan lol xx
Community Champion

Re: Nearly 4 years in and brain mets. Please help

Marnster...so glad you have a treatment plan you feel comfortable with. That sounds like a good way forward.

 

What's this swear day thing then....what's the premise of it...explain yourself Moijan ! LOL

Community Champion

Re: Nearly 4 years in and brain mets. Please help

Marnster... thank you for feeding back! Every time you talk about Oz, I get a shiver. I used to be a 'new Australian' after emigrating so very long ago, but just 'lived' in Nsw with trips to capital territory, Victoria etc, ID love to turn the clock back and do all the stuff you plan to do...,

Are you doing some of that first
? Just st in case you feel a bit tired afterwards........ well done tho and did the onc have any chemo suggestions prior to rads? As I note Truffle has been testing out at least one.... with favourable personal perceptions as to effects xxx

Love and Hugs, Moijanxx
Member

Re: Nearly 4 years in and brain mets. Please help

Hi all! Just thought I'd give you a quick update after meeting with the neurosurgeon today. He wasn't very keen on taking the brain met out as it's right on my motor strip part of the brain. Given the extremely mild symptoms I have from it, he felt that I could experience a worse outcome if he operated and I then lost mobility in the right side of my body. 

 

He he recommended we try radiotherapy first and see how it responds. If the symptoms worsen to the point that it does affect my mobility, we can always revisit surgery as an option to see if it then gives me some improvement. 

 

I'm feeling pretty good about what he said because it is not affecting me at the moment and I would hate to lose my mobility when I'm going ok as is. I have given up work to take some time to look after myself and travel. I don't want to spend the next six months sitting around trying to regain mobility in my right side. 

 

So where do I want to travel to? I really want to go to Spain and Portugal. I've only ever been to Barcelona and that was a very long time ago. I want to go to New York, San Francisco, Boston and Washington. I'd love to do a white Christmas this year for the very first time. I'd love to go to Africa and see 'the big five' animals. I'd like to go to South America. They're the main internationals. There's still a lot of Australia I'd like to see so hopefully I can squeeze in a few shorter trips around the place. I'd love to swim with the whale sharks and humpback whales off the coast of Western Australia. I'd like to go to Tasmania. I'd love to see the Kimberleys and Broome in Western Australia. I'm always keen to see more of the Great Barrier Reef. In fact, I've booked an island on the reef for me and six of my friends and their respective families for later in the year. There's just seven houses on the island so we'll have the place to ourselves. 

 

I just want to do fun and interesting things with my friends and family. And my dogs, though it's not always easy to take them places with you. While my health is good, I want to take advantage of that for as long as I can. 

Community Champion

Re: Nearly 4 years in and brain mets. Please help

Actually Carolyn, we might get known as the
' jolly swearing community champions' what do you think?

( bet you are regretting asking now xx)
moijanx
Community Champion

Re: Nearly 4 years in and brain mets. Please help

Yes indeedy Carolyn, in fact you can start it off if you like on Wednesday.... you have just two days to dream up the most vulgar, filth ridden shocking word to begin the day!

Ooh! Am looking forward to this xx
Member

Re: Nearly 4 years in and brain mets. Please help

Oh can I join in the Wednesday swear day too please ??
Welcome everyone
Carolyn xxx
Community Champion

Re: Nearly 4 years in and brain mets. Please help

Just pre testing the swear meter,  None of those set it off!

 

Well, just tried a range of middle offence swear words which didnt set off the swear meter....buggr and blody amongst them...am a bit afraid to test the front liners....might LEt lissa, and Zena( both cunsumate swearers -just a joke) Test it out !

Moijanxx 😍 

Community Champion

Re: Nearly 4 years in and brain mets. Please help

And naughty Zena, stop knocking yourself.... your words are just fine xx
Community Champion

Re: Nearly 4 years in and brain mets. Please help

Hi Zena
Sorry you are feeling 'bleepy'. So many relevant words I could shove on here.........but the moderator woulld likely intervene.........actually if .... WE ALL agreed to have a swear day, we could say that's what we were going to do... and test it out! Hi Lissa, Truffle, Marnster, Carolina, Charys, Zena..... Whaddyasay, Shall we have a swear day together? What day shall we book? We could set a time.... how about???? Wednesday this week...., ok ladies... on Wednesday we will have a 'gloves off' swear day, but we've all got to do it ! Who will go first I wonder?

Hugs Moijanxx
Member

Re: Nearly 4 years in and brain mets. Please help

Hi , I'm still here; in awe...
Lissa , you're fab .. everything crossed for scans and try vikings( Netflix) too its gory but brilliant xx
Marnster.. **bleep** crap time.. hate this cancer so much ..but as Lissa said good about surgeon, and yea where you thinking of going off to ?????
Truffle .. double of Tom hardy sounds good but not much else ... glad that chemo has gotta hold of that and stopped it .. it's magic when it works let's keep that going and get you driving again xx also love house of cards .. so intense 😯
Carolina , I think of you most days , I hope you are in a far flung land sipping cocktails but if you are not and need anything just ask xxx
Moijan .. brill about tms falling long may you get good results, including those pesky scans xxx
I'm not much good to anyone and my words are just words I know that . I don't have the same battles as you guys do. It's just getting the bloody bad days over and done with and out the way as I'm only doing the good days from now on.
((((((((Hug)))))))) for all of you xx
Community Champion

Re: Nearly 4 years in and brain mets. Please help

Hi all,

 

Welcome to Marnster! I'm so glad that a 'gaggle' of people are coming onto this thread, started by Carolina. Well, obviously not glad you are here, but glad you've found a place to add your voice, share experiences and get some support. Truffle-shuffle....that IS a great bit of news.....that you've actually felt a noticeable change to your vision...long may it continue! Strength to all of you on your continued fight, you awesome group Heart

Community Champion

Re: Nearly 4 years in and brain mets. Please help

Hi Lissa

You really have been a Godsend, by joining this thread! I'm sure your experience and feedback must be quite inspirational to Caroline, Truffle and now Marnster. Even though every case is different, there is likely a common thread of just how very scary it feels to think you are maybe the only one battling through this particular jungle.

The one thing that hit me when I joined in this thread was that Brain mets feel even more scary to most of us, because maybe they are the one thing a lot of us have been dreading...... I mean, we use our brains to mentally outwit negativity and work out our choices. I suspect that this could account for the smaller amount of ladies chipping in...

Which is quite ok.... hopefully they will see that talking about scary subjects can be a way of battling them....also any ladies with brain mets who skim through but don't feel able to post ... hopefully they gain some comfort and information along the way. Xx

Hope everyone is having a good weekend, yes Surrey is also grey, but less cold now.
I'm still envious of the lovely Australian weather, beaches, food etc that Marnster has access to xx
moijanxx
Member

Re: Nearly 4 years in and brain mets. Please help

Welcome Marnster,


In the nicest possible way, we'd rather you didn't have a reason to join us but since you do, we're glad you chose to & you have our support. I'm so sorry to hear you have a brain met & wow, what a lot you've had to deal with over the last four or five months! Your brain met case sounds similar to mine & I'm hoping the fact that you'll actually be discussing surgery with the neurosurgeon is a good sign - that's what the medics said when I got my first brain met. He was successful in removing my met & then CyberKnife radio was used to zap two other tiny inoperable spots that came up after. Important thing is you acted quickly after feeling the numbness. I mentioned the numbness in my arm to my medical team but it was four months before they made the correlation between that & my brain. Am sure you won't have to wait long before a treatment plan is in place & there's always hope it will be more successful than the last.


By the way, where are you thinking of traveling to? 😃


Keep us updated when you know more & will be thinking of you in the meantime.


Moijan, yes good news is always welcome so you having a lower tms count is encouraging & I'm keeping everything crossed the MRI shows improvement too. Completely understand the reality that a lifetime of chemo is frustrating but it is what it is. I've resigned myself to the fact that my hospital is my second home & will continue to be from now on. I certainly shouldn't complain considering you only have one week off out of three! I'm on Kadcyla (once every three weeks) & up until now, my scans have been clear. Don't know how confident I feel about the upcoming scan results though??!!! I shudder every time I feel the slightest twinge of pain or something unrecognisable going on in my body & the thought of changing to another chemo is daunting. Like you say, we've no idea what's around the corner.


Truffle, brilliant news re your vision. How unsettling it must've been so onwards & upwards for even clearer vision. My blurry vision is almost gone so anything's possible. 😊


Ladies, wishing you all a fab weekend. Very grey in London so I'm staying in, haha!

Much love, Lissa 💖💖💖 x

 

Community Champion

Re: Nearly 4 years in and brain mets. Please help

Truffle!

Thank you for sharing that snippet of news...... yes it's possible..... there's a lot about many of these drugs that they don't know. Your current one is pretty powerful

At any rate....., an improvement that you have noticed is excellent news.xxx

Everything crossed for a continued trendxx
Member

Re: Nearly 4 years in and brain mets. Please help

Morning Ladies,

 

 Just had chemo, and nurse said will be having more cycles before scans, so I am just going with the flow. I find everyone has different info, I have a bit of good news , but not bragging ,( things tend to bite me on the bum if I do).   

 

Following this cycle , my double vision is a little better, dont have to walk round like a pirate , with one eye shut. and can type with both eyes open, think a spoonful of chemo may have just forced its way through the brain barrier .

 

  have a good day everyone , hope Doris has flew away now, terrible xxx

Community Champion

Re: Nearly 4 years in and brain mets. Please help

Hi Marnster,

 

welcome to this thread xxx

 

lovely to hear from you.

 

Currently, there are three ladies on here sharing brain met experience, Carolina, Lissaneverknew and truffleshuff........

 

 

Oh, and lovely Stresshead,  Charys, Zena  and other cuties pop in from time to time xx

 

Hugs, Moijanx

 

 

Member

Re: Nearly 4 years in and brain mets. Please help

Hello all! Just joining this thread as I found out last week that I have my first brain met. It's in my left frontal lobe and I'm meeting with a neurosurgeon next week to discuss possible surgery followed by targeted radiotherapy. I received my diagnosis of secondary breast cancer in October 2016 after an initial diagnosis of primary breast cancer in June 2015. 

 

I have a few mets in my lungs and some recurrence in lymph nodes and on the chest wall. And now this little 1.3cm brain met. I've been on Eribulin since October 2016, but unfortunately my mets have continued to grow. Fortunately, it hasn't affected me greatly and I am still able to do the things I want to do. I had a couple of patches of numbness in my legs about a week before I had a CT scan that found the brain met. The numbness comes and goes and doesn't get in the way. I've been given some steroids to take to deal with these symptoms while we work out a treatment plan. 

 

Would love to hear from Carolina and how she's getting on. Similarly, I have just moved back in with my father and I am hoping to travel as much as possible this year, fitting in around my treatment. 

 

Hope everyone is doing ok. 

Community Champion

Re: Nearly 4 years in and brain mets. Please help

Hi Lissa,

love the Tortoise analogy xxx.


So very glad you feel better. Yes, I get it about the scans and the trepidation. Mixed with the
'cant wait to hear' . sometimes the waiting has felt more comfortable to me......have managed to 'enjoy' not knowing....as a method of pretending its not happening....eg not knowing can be more comfortable than knowing......I realise that may sound a bit daft xx

Which chemo are you on again? Here is a medicine cabinet🔋 to plunder at will, And a ⏰ clock for you to wind forward...to a period in time when you feel better still! Xx. You are an inspiration to us xx

i had my mri yesterday ( thank you for asking....my last MRI was really good news as the bc had gone into scar tissue.but....the chemo/a chemo, will always be part of my life now.) my tms were still falling at the last count. However......none of us know what is around the corner....we have to snatch at tiny bits of good news and revel in them whilst the sun shines...dont we? 😎

was thinking back to the start of this thread tho...you must have been reading it for a while before posting....when I was posting and nattering to Carolina?

So in fact , now, there are likely lovely ladies scanning through silently, without a sound xx

lovely ladies who are passing in the night...please, if you can, tap us on the shoulder and say hello....

It really can make all the difference to hear how some of you are getting on. good or less good news is equally welcome, maybe we can help? Xxx

Truffle, Carolina and everyone else.....much love and hugs xxx

Moijan🙆 💖💖💖

Member

Re: Nearly 4 years in and brain mets. Please help

Hi Moijan, 
 

How are you doing?


I'm feeling a little better thanks. 😊 Managing to move around a little more. Getting out of bed's a hilarious task though... picture, if you will, a giant tortoise stuck on it's back waiting hopelessly to be rescued.
😂😜


Yes, I've both an MRI & a PET/CT within the coming weeks. Can't wait to have them but am terrified at the same time! 😬 Thanks for asking. 
 
Truffle, I think Moijan's right. Sounds like it can be tiring post wbr so there's little choice other than to rest... loads. CyberKnife exhausted me but not straight away. I imagine wbr is more immediate. All the best with number 5 tomorrow & hope you can have a scan soon with good results. 
 
Stay well everyone. And please keep us posted on how you're all doing.


Take care until... 💖💖😍

Community Champion

Re: Nearly 4 years in and brain mets. Please help

Am so glad you feel calmer.... yes that website gives a pretty good description of the process and that people find it helpful

Hopefully you will get good news from your scan xx
Moijan💚💚💚
Community Champion

Re: Nearly 4 years in and brain mets. Please help

Hi Truffle,
Fingers crossed xxx

what seems to happen is that after wbr, ladies don't let us know how it went/ how they found it etc. I guess it also makes them a bit tired.

If you feel up to it afterwards, Truffle - do
Let us know how it went, obviously only if you want to xx
Member

Re: Nearly 4 years in and brain mets. Please help

 hi Lissa , Moijan, 

 

 

Got 5th chemo tomorrow , hope I get a liver scan then , no clues if it is working or not, just hope it is then they will start the brain treatment . I am feeling a lot more calmer now, think we adjust to anything given time dont we ?

 

Just had a good weekend in the lakes, so chilled , but got to get bak to house of cards, loving it , hope you ladies are feeling good. xxxx

 

take care  , keep well xxx

Community Champion

Re: Nearly 4 years in and brain mets. Please help

Hi Lissa,

 

hope you are feeling a lttle better.😍

 

Nice to hear from you. Are you due a scan soon? i have an mri in a short while, but look forward to hearing how it all oes for you xxx

 

Truffle...hope things are going well. For you too xxx😍

Moijan💚💚💚

Member

Re: Nearly 4 years in and brain mets. Please help

Hi lovely ladies,

 

Apologies for not coming on here for a while. Had a busy week last week - think I overdid it - then had chemo on Friday so am feeling a little rough & miserable. Also did my back in so in pain! ☹️ A good excuse for me to start watching House of Cards so thanks for the suggestion Truffle. I've heard it's brilliant but I always come to these things late. 😂

 

Hope you're all doing well as can be. Praying for good news for you Truffle. 🙏🏾 

 

Take care until... 

 

Much love, Lissa 💖 xxx

Community Champion

Re: Nearly 4 years in and brain mets. Please help

Hi Truffle, yes, I echo lovely cuddly Charys in her wishes for you.

 

Please, please, feed back how everything is going...obviously, im not in your boat re brain mets, but I do have about four things wrong with my eyes and actually, eyes are so very precious...am praying you get an improvement from the wbr for everything, including your eyes. 

 

Lovely Lissa sounds as if she has had some improvement re her arm..,and other bits too

so do travel hopefully..we are all with youxxx

 

Moijanxx💚💚💚

 

 

Community Champion

Re: Nearly 4 years in and brain mets. Please help

Hey Truffle_shuff,

 

Wishing you as easy a ride as possible with the Paxol, and in keeping your incredible strength and resilience throughout it. You so need some good news, I can see that, and I pray also that it is coming your way. x

Member

Re: Nearly 4 years in and brain mets. Please help

 hi ladies, 

 

 thank you for your support and information, I have read the wbr site , very helpful , so not dreading it as much , that is if they go ahead with it , they need to stabalise the liver mets first cycle 3 of paxol tomorrow , never prayed so hard in my life that this will work. Juststarting to lose hair today , bet it does not shift my upper lip hair though , ha. I am feeling betterr now, thanks to you all and your info and support. I just dread seeing the docs as all I have had is bad news from them , the nursing staff are just brilliant . I am having treatment at christies Manchester, I will be so sorry to have to leave work, I love it , but cant drive , right arm useless , and no way can I drive , due to vision. feel robbed , but what will be will have to be .  

 

On the up side I have just started House of Cards , love it ,just brilliant ,  take care ladies you are all in my thoughts xxxxx                                               

Community Champion

Re: Nearly 4 years in and brain mets. Please help

Much love and hugs to you....its really tough if you work in this field....hard not to imagine getting stuff that you have seen others go throughxx

 

remember...we Are all different, come from different cultures, experience,  genetic codes, etc etc and so things dont just follow a pattern....there is always something new coming out, always hope on the horizon....

 

have no idea how I would try to cope in your position...I would likely, keep chatting to helpful people like your pain nurse, .....Im from an nhs background and have similar battles with myself , but not precisely your situation tho xx

 

keep coming back here and chatting to us..,,

 

We are here...you are not alone in thisxx

 

Moijan💚💚💚

Member

Re: Nearly 4 years in and brain mets. Please help

 thank you ladies,

 

 I find your posts just inspiring, I had a goog old heart to heart with the pain nurse , find her invaluble. she put things in a better light for me as to why I feel so crappy., I do work where I am being treated , so in her words my knowledge is overwhelming me , and not for the better .also , as she put it I have had the fiesty  women in the meetings has melted away , and with good reason, as for the last 7 clinic visits , my situation has been getting a little bit more involved, never once have I had a good result. So looking at it that way , yes I need a bit of healing mentally time.

 

wow how one conversation can improve oulook .

 

 thank you for the report , gonna settle with morning coffee, and read through, hope everyone feeling well or on the good side of ok.

 

 sending you all hugsxxx

Community Champion

Re: Nearly 4 years in and brain mets. Please help

Hi again Truffle...just did a little searching and came across this oldish thread on a website(2012) 

well, there seemed to be quite a few positive answers re wbr effcts, from doctors on the page...may think its worth a 👓

 

http://cancergrace.org/radiation/topic/brain-radiation-success-rate/

 

Love and best wishes

 

 

Moijanx💜💜💜

Community Champion

Re: Nearly 4 years in and brain mets. Please help

Hi Truffle...not sure the oncs will be able to predict, but if a met is pressing on something and causing the double vision....seems logical that if the wbr reduced that met...then maybe the double vision could improve. How bad is the double vision truffle? And do glasses help at all? 

 

Glad that we can help you keep cheerful... We realise how very hard you must be finding things just now...

 

..was thinkng that maybe ( if you find straight answers helps you) you could see them again , take an advocate/very good friend along to take notes  and push them to be really explicit......but ...they may not know the answer.

 

Also I think weve all been in a situ where something the onc says....or the way its put...can leave us even more worried.

 

Speaking just for myself here....id find it hard not knowing all the answers, but might decide that I dont want to hear anything that could spook me just before wbr.......I mean, noone knows what response there will be for certain.....so id try to go in with the very best optimism .....hope that helps xxx

 

love and hugs...please, please do feed back how it goes....where are you having the treatment?

 

moijan💜💜💜

Member

Re: Nearly 4 years in and brain mets. Please help

 thanks ladies, , you always pull me up , I am going to try harder, starting with today, back on healthy life plan , just one choc a dahy now , not three.  and exercise , I have got bambi legs , dosnt take long for muscle power to go does it. Does anytone know ifwbr will help my double vision, no answers from the oncs???

 

 

 thank you everyone xxxx take care 

Community Champion

Re: Nearly 4 years in and brain mets. Please help

Stresshead

have private messaged you

 

Moijanx

Member

Re: Nearly 4 years in and brain mets. Please help

Truffshuff...just wanted to echo what the others have said....you are not a wimp and you shouldnt be ashamed. You are a normal human being faced with the biggest nightmare we all dread and you are having perfectly normal reactions. We all know how you feel...please use us as your punch bag. Hope you start to feel a little better soon. Lots of love. x

Community Champion

Re: Nearly 4 years in and brain mets. Please help

Hi Lissa, Truffle and Carolina,

 

 

was reflecting upon your exchanges, truffle, with Lissa,  Your trepidation is very understandable....and maybe your feelings  could be a kind of self preservation mechanism? You know....'im afraid to expect too much...in case'  . i think we all do that at times and was thinking that must be such a very lonely place to be...wish we could sneak in and whisper reassuring words into your ear xx

 

but, Truffle...'what if' ? What if things work so much better than you fear?  

 

 I did say to my onc, when my mets came 3/4 years ago, 'please, never tell me I have say, only 6 weeks to live' and he said 'we dont do that'...I was really happy to hear that because although Ive always wished to know the score re my diagnosis...I also know that if anyone said that to me...chances are it would happen, because when a doctor says something...we tend to believe it! And that takes hope away psychologically.

 

the other thing is...there has been research that shows that very sick people who were pronounced at high risk, who attend support groups have lived twice as long as expected.......this forum is a kind of support group

and I really believe that sharing with others in this way helps us survive xx

 

Lissa, you asked how I was,I  am apparently improving on Eribulin....am awaiting my reg tms result this week...

 

i have to stay on it 'until it stops working'  before he said that...I had hopes it might have been a miracle cure...but his words have eaten some of  that hope away....see what I mean?

 

 If I think more laterally......I can see that people do sometime get cured of this Buggr.....and in relation to Truffle and Carolina...have read about improvements that wbr and other treatments can bring about. 

And you, yourself appear to now be on a very hopeful path xx

 

Carolina, am sorry we havent heard how you are..but my guess is that wbr takes a little while to recover from...I would expect you to feel a bit tired. Lots of love and best wishes...hang  in there xx

 

Moijan.💖💖💖💖

 

Member

Re: Nearly 4 years in and brain mets. Please help

Thanks Moijan. I hope you're doing well too. 

 

Also thinking of you too Carolina. Let us know how you're getting on. 

 

Much love 💖 xxx

Member

Re: Nearly 4 years in and brain mets. Please help

Hello Truffle,

 

Ashamed??? Well, I'm glad you came on here. Please do not beat yourself up, you're allowed to feel the way you do right now... there are no rules! I recall going through the same thing & it's possible most of us on here have. Before I started chemo, my oncologist seemed vague about my future. It wasn't her, it was me. I don't know if it was my interpretation of her wording, attitude... whatever it was, I thought there was no hope so I refused to ask about time. And it didn't help that when I saw ad campaigns about cancer or read articles, etc. there were all these smiling, courageous faces that I felt I had to live up to. Nothing makes me more happy & encourages me more than to see the smiling faces BUT the pressure I put on myself to be brave was incredible! Anyway, whatever you're feeling is valid... the unknown is scary! Feel free to rant & rave on here. Take all the time you need. You're no wimp! 😊

 

Much love, Lissa 💖 xxx

Member

Re: Nearly 4 years in and brain mets. Please help

hi ladies,

 

 well first chemo on thursday , feeling shocking,  i have lost my faith , i just cant see this will do anygood,   two weeks ago .i felt okish , now feel crushed, i was to scared to ask for a time line , but doc didnt seem to be givin off any good vibes at all . I truely hope things ill change , just need a bit more time , then i come on here and i feel ashamed , you are all trying so hard, i feel so wimpish .

 

 keep well . love to all , oh imon paxitaxol hope it does work on liver xxx

Community Champion

Re: Nearly 4 years in and brain mets. Please help

Hi Carolina, was wondering how things are with you now?  Did you go for cyberknife?

 

 

truffle shuffle, are you feeling any better? 

 

Do let us know how things are going...you are all often in our thoughts....as are you too, Lissa never knew

 

hugs, Moijan💜💙💚

Community Champion

Re: Nearly 4 years in and brain mets. Please help

Truffleshuff!
So glad you eventually,found this thread...sorry if my link wasn't that useful

So you have at least two buddies now who know precisely how you could be feeling
Please do come back all of you when you can... as I am pretty constantly thinking of you all and will sign post any newbie brain mets to this threadxx also if it isn't used it will sink again eventually
and be difficult to find for any newbie bm
Ladies

Lots of love and good luck with wbr Carolina and Truffle xxx
Moijanxx
Member

Re: Nearly 4 years in and brain mets. Please help

Hi,  Lissa never knew 

 

 Thank you for reply, would be lost without this site. Its ok talking to the docs n nurses, but I feel much more comforted talking to others who have lived this  horror , and sometimes when I ask docs , I hate the answers which seem so vague , in case we hold them to info , and sue them later for mis information.   what treatment are you having.

 

 No rush with answer , understand , we need fisher price toy type writers xx 

Member

Re: Nearly 4 years in and brain mets. Please help

Hello Truffle,

 

Welcome to the site & this thread. Sorry to hear about your liver & brain mets but it sounds like there's a treatment plan in place, thank goodness. Don't worry about your punctuation. I have similar problems with my arm so I understand the difficulty with limited arm use & typing. I just take my sweet time... I mean I'm really slow, haha. Hope your arm functionality improves.

 

Glad you're finding some comfort from the stories on here. I feel the same way... all of them have given me hope & everyone's very supportive so please keep reading.

 

Agreed, we do need a cure!

 

Best wishes, Lissa xxx

Member

Re: Nearly 4 years in and brain mets. Please help

 hi , found the site,  been reading through, giving me hope . I am diagnosed with liver mets and 3 lesions on brain , no treatment until the liver is sorted , and then wbr only , which is so scary , so hearing that is not so barbaric , has given me hope. hope you will excuse the punctuation  .i find it difficult due to loss or arm use as axilla met on nerve , just as an add on I think.  bones doin ok though .

 

 

  will keep reading your upliftinf stories and wishing you all well , we need a cure now dont we xxxx

 

keep well xxx

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Community Champion

Re: Nearly 4 years in and brain mets. Please help

Just got back from the onc and have chemo tomorrow at 12.0 .....

have been thinking about you Carolina and fingers crossed today has gone as well as yesterday xx

 

i must admit, never felt much different after rads, but guess you might be a little tired?

 

how long does a  wbr session take?  

 

Pmd you yesterday...do pop in and see me if you are around ......I will be the person with my arm in the sink!

 

am usually there a bit earlier in the restaurant and also afterwards in there. Came down yesterday to see if I could spot you.

 

Keep in touch xxx

 

Moijan💜

Community Champion

Re: Nearly 4 years in and brain mets. Please help

Wonderful Carolina, and yes you are inspirational. Glad the treatment went ok and ..only 4 more now.

 

am a bit envious of you going so often to oz, I emigrated there in my 20s, have been back once but now tied to an i/v two weeks out of three! Love travellingxxx

 

keep us posted. Great stuffxxx

 

Love and hugs, Moijanxx💜💜💜

Member

Re: Nearly 4 years in and brain mets. Please help

Ha no silver trays now but they are lovely still my fav airline!

Ok so did my first out of 5 today and it was ok.. x
Member

Re: Nearly 4 years in and brain mets. Please help

Wow amazing you go lady - live it all,every drop !!
Had to carry a sliver tray round everywhere in those days (1998) right pain in arse - let me know if they still do 🙄

I flew 2 falcons once in first class the guy had bought them a seat each - they just sat there with thier hoods on ..,crazy !!

I don't know anything about what's happening to you but I wanted to talk to you as just smiled thinking of you off and about with that going on .. made me get off my sorry arse today and do some bits as I was feeling really low xxxx
Your wbr will go well and so will MRI ( hate that machine) .. and you'll be sending us a pic of Bali as soon as Hun , after your emirates flight you lucky thing 🌏 X

Member

Re: Nearly 4 years in and brain mets. Please help

Zena i love emirates went to oz with them first class (bucket list) and going to Bali with them! What a wonderful job. I replied above about my money situation I don't mind people being nosey! Of course i can send pictures x