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Brain mets

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Re: Brain mets

Hi Bev, I am so sorry must have been very scary. I haven't any advice, but be sure that you are in my thoughts and prayers. Marie xxx
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Re: Brain mets

Oh Bev, that sounds so scary for you and OH. I'm sorry I can't help with any advice but just wanted to say I am thinking of you and I hope the rads do work and you can get onto the chemo as well. Sending hugs and can't imagine how frightening this must all be for you.
Nicky x

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Re: Brain mets

Oh Bev I am sorry, how frightening for you. I hope others with brain mets will be able to advise. Will keep this bumped up over the weekend for you. Take care, with love. XXX
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Re: Brain mets

Ah well......not good. Was 20 mins into the consultation at 2.30pm tues...next think i remember was waking at 8am the foll day...wed.. i had a seizure in his office. Knew nothing. They apparently called the paramedics and took me over to University Hosp. I had ct scans as well and cant remember that either.
Came home 9pm last night. Im so scared now cant begin to tell you.
They're going to do rads next week now and leave chemo. So no chemo again.
Was also told today that no guarantee the rads will work. So.. doesnt sound like a lot of hope.
Has anyone else gone through this?
Have rads worked for you?
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Re: Brain mets

Hi Bev, hope you're ok and resting up today after your trip to London. Sheila - hope you are still managing - you must be exhausted now. Keep going - nearly there xxx
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Re: Brain mets

Hope yesterday's appointment went well, was helpful Bev. XXX
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Re: Brain mets

Hi Bev,

 

Best of luck for tomorrow. I've been to see the person I think you are seeing a couple of times and found him helpful.

 

Hi Sheila,

 

Thinking of you too and hoping your treatment is going OK.

 

Tournesol x

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Re: Brain mets

Hi Bev,  will be thinking of you tomorrow, positive vibes are at full alert.

Take care Marie xxx

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Re: Brain mets

Bev,huge hugs for tomorrow xxxxxxxx
Shiela, how are you doing?

Huge hugs,Helen xxxxxxxxx
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Re: Brain mets

Just want to let you know I've got everything crossed for tomorrow Bev. Had a lovely surprise to read your post from this morning as you are sounding much better.
Sheila, you must be half way through now - just think about how well you'll feel when it's worked its magic.
Love to you both x
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Re: Brain mets

Hello Bev been thinking of you over the weekend so just popped on to wish you all the best for this week. Glad to see your post this morning and that you are feeling better.
Keep well and anticipate that holiday, it'll be here soon..xx
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Re: Brain mets

Good luck with your appointment tomorrow Bev, I hope you get some good, clear answers. Also hoping that the trip to the specialist isn't too exhausting, I know what it's like.
Nicky x

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Re: Brain mets

Bev, Good luck with the vinorelbine. Hoping this one works wonders! Funny Face

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Re: Brain mets

Helen, I hope I counted right for Sheila' s treatments!

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Re: Brain mets

All the very best for your appointment tomorrow Bev, take care..XXX
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Re: Brain mets

Oh,shiela,5 over!! Yippee .How many more? As with Bev us mad lot are with you every step of the way.
Massive hugs and hope your not as wobbly on legs as you were ,get plenty of rest and look after yourself ,Helen xxxxxxxxxxxxxx
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Re: Brain mets

Bev,you sound like you again xxxxxx
You keep that holiday firmly at the front of your mind.you go kick butt and get buying some holiday clothes . A holiday is the best medicine you need.

also,Apparently we can eat 100 of Easter eggs and m&Ms and bacon sarnies next Easter weekend as this is good medicine.
Oh,it may be the steroids and I didn't read that. Lol

Bev,we are all here for you . I think of us as the CRUK advert for the run on TV All mad ladies off to kick butt,I think I'm the large lade after my m&Ms weekend. But keep that image in your mind(not the large lady) and that's us with you.

Massive hugs,Helen xxxxxx
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Re: Brain mets

Thank you. Just a quick hello.. im feeling absolutely fine. Mentally in a better place than 2 weeks ago after having the new dx. Onc doesnt seem to be in a hurry to treat the brain mets...so plan is to get the Vinorelbine in me first this week then look at poss rads afterwards. But at this stage because I'm asymptomatic leaving well alone.
Im still out shopping cleaning meeting friends etc. Just making a nuisance out of myself in general! It all just goes on for now as normal i suppose.
Just praying that a treatment starts working soon!
My precious family holiday (fingers and all other body parts crossed!) is in 10 weeks.....soon as chemo finished.so praying the se's will be kind to me before i go!
Lots love xxxxxx
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Re: Brain mets

Sheila, According to my calculations you should have 5 treatments over with! Yahoo! Hang in there! Hugs, Funny Face

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Re: Brain mets

Bev,xxxxxxxxxx
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Re: Brain mets

Hello Bev

 

just wanted to wish you al the luck in the world for tuesday. my thoughts will be with you on that day. 

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Re: Brain mets

I haven't been on here for a while as the whole village has been suffering with gremlins in the internet connection so have just been having a quick catch up. I just want to send my best wishes to all you other "brainy" ladies out there. I have brain mets as well as liver ribs and spine but is certainly the brain that is the most scary. What makes me so terribly cross is that you may have to pay thousands for treatment because it is not available on the NHS due to cost. I will not get on my soapbox concerning health tourists and aid to countries with corrupt governments for fear of upsetting anyone with opposing views!! I got my diagnosis for my boob a year ago in a couple of weeks time the rest confirmed a couple of months later but looking back the brain mets were already there due to the symptoms I had but I am still here feel very well apart from getting a bit tired. I have lost probably 90% of my vision in one eye due to the mets and my legs sometimes don't want to go in the same direction as the rest of me but I can live with that. I just want all of you in the same situation my love and some cyber hugs and the hope you all get the treatment you deserve. Vickyxxxx  

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Re: Brain mets

Bevlaar..so sorry to hear you are having such a stuggle. My heart goes out to you but please dont give up. You have come so far and have been such an inspiration to many. I know its easy to say but not easy to do but we are all with you. I know nothing we can say will alter your situation but hopefully it will help you know that everyone is praying your next treatment works. Sending loads of hugs.xxx

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Re: Brain mets

Hi Bev, thinking of you today and hoping you can get some rest or even sleep during the day now that you have set the wheels in motion. I know how our minds go into overdrive about everything to do with this bloomin disease and any changes, whatever they are, set us off even more so it's no wonder you had a sleepless night.
Take care
Nicky x

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Re: Brain mets

Hope you can get some sleep in the run up to Tuesday Bev. Do you ever read any of Lemongrove's old posts? She was so knowledgeable about the options she had for treatment for her brain mets. There may be older posts from others with lung mets. I often use search here and find some helpful info. Take Care. X
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Re: Brain mets

Well i was up with the larks so emailed and confirmed my appt in London for tues...they cdnt do monday... and emailed my hosp onc sec to fax or email the copies of reports they want in advance.
Just waiting to hear theyve done that ok for me.
Very apprehensive and dont feel myself at all but at least i have 9 weeks of Vinorelbine yet and brain rads after that. Xxxx
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Re: Brain mets

Oh,Bev,I don't have any advice. God,I feel so helpless for you. PLEASE ,stay strong,there is something out there waiting for you. I wish Monday was here so at least you could be more informed and have someone to talk to about treatments.
Stay strong,I know it's hard xxx we are all here for you lovely lady,Helen xxxxxxxxxx
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Re: Brain mets

Is there anyone at all here having successful treatment for brain and lung mets??
Im feeling so lost and scared. Especially as lung mets not responded yet to chemos since last Oct.. 😧
Cant seem to focus to even sleep let alone do anything else!
Havent started WBR to brain yet so sort of pushed that onto back burner for now. Xxx
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Re: Brain mets

Whichever way you decide to obtain your second opinion I hope you have many more options available to you x
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Re: Brain mets

by the way i have a question - can you ladies help.  had the results of the biopsy to my liver the other day and my cancer has not changed. the nurse said 'that was good as it means they are treating it right' Eghh?  What  does she mean by that! i am still her- estrogen+

 

is it good? really?  why? .............  anyone know????

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Re: Brain mets

hi bev

 

no, if there are trials you do not have to pay  - quite the opposite, the drugs company   they pay for your travel and other expenses.  do let us know what t second opinion says.  ss

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Re: Brain mets

Thanks for all your lovely comments and advice. Yes rang Mars and wd have to wait for my gp to refer..about 2-3wks and send loads letters reports scans etc first. £600 for 40 min consultation. The team told me today theyre not sure if there will be trials there at this time for both lung and brain.
The LOC say i can fax and email just last few copies of scans ct reports and letters the day before i go.
£350 consultation 45 mins.
All seems a bit easier especially access. 20 mins from paddington.
I'll be honest and say i cant see them offering a lot more for me as options but will try.
And of course i dont know how much it will cost as im private with no ins.
Ive heard tho that the drug trials if u get on them wouldnt cost? Just private drugs. Is that right info?And i bet they cost the earth....i cdnt possibly afford.
Its so worrying xxx
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Re: Brain mets

Bev I am under that particular Proff at the marsden and met him only a few weeks ago ! He is really lovely and highly respected within the medical field . I am an nhs patient not private . I travel 2oo miles each time I go also and know of patients who travel further . Some fly in from Ireland ! I hope this helps and you are able to discuss more options Available to you x
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Re: Brain mets

I really hope that all our love and positivity is helping you at this awful time, Bev. I completely agree with everyone who suggests getting a second opinion as it will put your mind at rest if it is the same as your onc's, or will result in an alternative treatment plan. Either way, I'm sure it will make you feel better.
Sending lots of love to you and your family x
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Re: Brain mets

Hi Bev

Have been reading all the links, wishing you oodles of luck for Monday. I will have angry eyes ready for action.

I found this quote from Dr Seus ' Now my troubles are going to have troubles with me '  I found this helpful as I think of the big C as a playgroung bully.

Sending positive hugs. Marie

PS To those keeping up with the Poldark saga between Chocolates and me. I have not been unkind to her. Ross and I are now  married ; it was a very quiet affair and I am having his baby. This is the end of the matter.

Love Marie Poldark.

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Re: Brain mets

Hi Bev, if you go for a second opinion at The Marsden you may have to wait for a clinic time to be available as it's NHS, however when I had my appt/s with the Prof I didn't have to wait too long, maybe a week or so. However if you pay to go privately to Harley St I'm assuming you would get an earlier appointment time. Either way you could do both as the NHS appt would follow on from the private one.
Take care, we're all rooting for you 🙂
Nicky x

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Re: Brain mets

Oh Bev, so sorry! I have just been reading all the lastest posts and came across your news. I am so sorry to hear this. Just to echo everyone else (that sounds so inadequate, but all my heartfelt feelings are behind it),  but you are very wise to seek a second opinion (go for a third if necessary - don't give up on yourself!). You say you have loads of questions - do you have someone to go along with you to hear the points/answers you might miss? We are all behind you with our thoughts and wishes (and angry eyes if necessary). Hugs and best wishes, Barton.x

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Re: Brain mets

Bev, I don't know anything about WBR after vinorelbine. I know my friend had it after xeloda (cap). Is abraxane still available on your health care? I wonder why your onc feels you can't have a combo? Sounds like a question for second opinion man. I'm glad you have mustered up the strength to move forward with second opinion. I also would ask for his opinion on WBR after vinorelbine. There is an American forum called bcmets.org and it is supposed to have a good brain mets section. I also think I spoke too you awhile back about vinorelbine. I had along easy ride on it and I have lung mets. Keep in mind you never know which drug will work for who. I'm hoping it will work for you. Funnyface

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Re: Brain mets

Just to say, Bev, that I can recommend Belindas first link, don't think I'm allowed to say more but have personal experience. Thinking of you, you might find that something completely different is suggested xxx
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Re: Brain mets

Oh Bev, in your shoes I would ring both, definitely the Marsden but both. xxxxx
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Re: Brain mets

Am poised at phone to make appt for monday with onc at london harley st...or shd i contact the RM belinda? dont know whats best?
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Re: Brain mets

Just wanted to add my support for you Bev, having only just read your update from yesterday's appointment. I can't add anything else to what has already been said other than to get a second opinion, even if it is to confirm the treatment your current oncologist is suggesting. It must be a terrible shock to you when you thought you were starting the WBR but give yourself some time, book the appointment, and go armed with as many questions as you can think of to make sure you are covering everything. Take care, we are here to help, as ever.
Nicky x

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Re: Brain mets

Oh bev,there are treatments. Just remember kiss a lot of frogs before you find the prince. There IS a treatment out there.
I feel your getting a bit of our Bev back,take it easy,be kind to yourself and together all us balmy lot will be kicking butt.
You are such a wonderful lady that it breaks our hearts to see you upset. We are always here for you,Massive hugs,Helen xxxxxxxxxxxxx
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Re: Brain mets

From reading your latest news Bev seems, to me, it's really good you are getting a second opinion. The Onc is saying do you really want WBR and yet you do still want, he must know this, everything tried and explored.
It must be hard to stay positive when you are getting shakes of the head. There is at least one centre of excellence for brain treatments in England, I think there's a couple and whilst in London how about a night's stay and seeing someone at the Royal Marsden for an overall opinion of what might be options. There is a particular Prof there who has patients who travel hundreds of miles to see him and have done so for years. Sending you and your family much strength and love, x,
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Re: Brain mets

Thanks helen. Just looking at booking train times for monday for london. Can get there monday ok. Will ring clinic this morn as they have appts. Im still shaking tho...cant believe this and so unsure that theres treatment there for me after Vinorelbine. X
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Re: Brain mets

Bev,we are all sitting with you and holding your hand. I do hope you can feel our love and friendship. Keep positive lovely lady. Get your head around things and get that second appointment sorted. We are all with you with our angry eyes ,hob nailed boots the kick the little Bs butt.
Huge amount of love and hugs coming your way,Helen xxxxxxxxxx
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Re: Brain mets

Funnyface. I started cape last july. Worked for only 3 months. Then docetaxel worked 2-3 months. Then Carboplatin and letrozole from jan as new mets appeared in other good lung.
Last week mri of head showed 4 brain mets at back of head. Cant have rads while on Vinorelbine and he said even after chemo...i would have to think hard about WBR as the side effects can be nasty. But what choice do i have??????
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Re: Brain mets

Have rung name edited by mod sec and made prov appt for friday or mon next week in harley st for 2nd opinion. Prob go monday to give me time over weekend to get my head round....and write down questions. But really dont know where to start. My onc ruled out the combined chemos. Everything i mentioned he just sadly shook his head. Didnt say much at all. I didn't mention second opinion then but did last week and he ddidn't object at all.
He wants to do Vinorelbine for 9 weeks from next week then scan chest. If still not working he said only other would be eribulin but i would def have to pay.... £18,000.
Then no guarantees I'll respond to that either. When i asked if i may possibly respond as it seems a good drug, again he just said...."we dont know.. probably not based on things so far!"
Is it really worth me chasing this after all the options i threw at him today....to be knocked back on nearly everything?
He said that there are certain cancers that just dont respond to treatment and mine seems likely to be one. God im so frightened and cant think eat or sleep.
I felt sure i had years of options yet but.....
Im in total shock xxxx



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Re: Brain mets

Bev, I'm sorry to read this. Please forgive me but I don't remember what treatments you  have had. I seem to remember they have been singe line. Maybe it's time for a combo. Also wondering if you need a new biopsy to see if they are the same. I also think I would seek a second opinion. You have had a lot placed on your plate,/ hang in there! Funnyface