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!
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
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.
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 !
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
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
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
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
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.
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
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... 💖💖😍
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
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😍
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
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
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
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
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
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
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 👓
Love and best wishes
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?
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
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
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
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
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
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
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
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
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
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
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
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💜💜💜