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Brain mets

Lucy21
Member

Re: Brain mets

Sorry process
Lucy21
Member

Re: Brain mets

So sorry to hear your news . I posted a few months back about getting a second opinion at the royal marsden . As some of the ladies have said maybe you could get an urgent referal . I think I mentioned it only took about 2 weeks for the whole proce and after seeing the team I transferred my care and have been there ever since . They treat people from
All over the country so I think you could be seen even though living in wales . Hope this helps x

Chocolates
Member

Re: Brain mets

Oh Bev - no this is dreadful. I'm so so sorry. I think like others have said that a second opinion could be very useful. Take heart from Sheila's post - she was so ill last year but is coming back from this rubbish. Huge hugs lovely lady. I'm coming to sit with you. xxxx
roxy12
Member

Re: Brain mets

Bev please don't give up. I had tried taxotere which didn't work as well as several ai's and I was too poorly with high calcium so they couldn't give me anything. When I was slightly better my onc said he would try vinorelbine as my liver was in a mess. He said that if if this didn't work he didn't know what to try. Guess what?.  It worked! My liver was much better and my lung's and bones were stable. He also said that he could try other treatments now that I had responded to this. So there is a good chance this could work for you Bev. I have a feeling ( not sure) that this goes through the BBB.

Good luck Bev. Lots of love. Sheila. Xxx

LemonDrizzle
Member

Re: Brain mets

Oh Bev I don't know what to say. Although it's an awful shock don't give up as things can turn around quickly. Sending love to you and your family x
2catlady
Member

Re: Brain mets

Oh,bev,I wish I could hug you. Please don't give up there is something out there. You are a strong positive ,beautiful person . We are all here for you my dear friend.
This disease is #### but you are strong and you'll get over this hurdle with all your cyber friends on here pushing you.
I'm sending all my love and positive thoughts with the other ladies,massive hugs and love,Helen xxxxxxxxxxx
Stillhere
Member

Re: Brain mets

For Bev- massive HUGS, positive thoughts and prayers. As others have said, a second opinion needed. Meanwhile all of us are right with you, willing you on. Please take courage from that. Xxxxxxx oooooo xxx
Porkie
Member

Re: Brain mets

Bev

I am so sorry but please do not give up hope, when you feel stronger consider going for a 2nd opinion - you have nothing to lose and lets pray that vinorlebine is the one that will work for you. You are in my thoughts, stay strong, easy to say I know. xx

Marie123
Member

Re: Brain mets

Dear Bev,

What a sh*** Illness this is. I agree with the others , get a second opinion and although extremely difficult hang on in there. You are in my thoughts and prayers. I will be sending  enormous positive vibes across the country.

Please take care

Marie

Macie40
Member

Re: Brain mets

Oh Bev I feel so sad after reading your post I agree with the other ladies there has got to be something out there for you please go for a second opinion if not to the Marsden perhaps another hosp within your region.this is a very scary time for you but you are a very strong lady just be strong for a bit longer and the right treatment is going to turn up for you sending you hugs and lots of love Macie x x x

springsummer
Member

Re: Brain mets

dear bev

i was so sad to read your last post. ;what we all have to go through is very scary. don't despair yet. ;you need to find the treatment that works for you. there are still options out there for you. how about a referral to marsden - prof ****** is the best in the country for bc and there are also a lot of trials they do. i'm on one at the moment and it seems to be working. dear dear bev stay strong you sound like an amazing woman. ss
belinda
Member

Re: Brain mets

Oh Bev, I don't know what to say. What about an urgent referral to the Royal Marsden in London? Even if you have to temporarily move over the border? Lots of LOVE. X
Lucy_BCC
Member

Re: Brain mets

Dear Bevlaar, so sorry to read your post
When you are ready our helpliners are on hand for you so do call for some support

0808 800 6000 9-5 weekdays and 10-2 Sat

Take care
Lucy BCC

Bevlaar
Member

Re: Brain mets

Cant cope with all this **bleep** anymore. Its so unfair. Carboplatin not working either and lung tumors still growing significantly in last 2 months. Onc wont start brain rads next week as he says lung now takes priority.. but he added that its looking that my cancer is not responding to any type of chemo. 3 have failed and now he's starting Vinorelbine next wk but just for 9 weeks then will scan chest again.
If that fails i can pay for eribulin myself but again with no guarantees.... what the hells the point????
I feel its all lost... isnt there anything or anyone that can help me????
Cant post on here now..too upset. Cant stop crying. but will read xxxxz
Bevlaar
Member

Re: Brain mets

Thanks ladies. Macie the Imperial is gorgeous...ideal for location with beautiful unobstructed views over the sea right in front of you and a few steps from beach. You can walk easily there. If you can travel just a few mins you have to try and get to Barafundle bay. So pretty. But just relax and chill. Enjoy the scenery and hopefully the good weather! I'm sure youll enjoy and come back refreshed with the Pembroke air!
Lots of love xx
roxy12
Member

Re: Brain mets

Thanks Porkie, Nicky and funny face. Second one over next one this morning. Don't feel too bad as yet. Hope this continues.

Good luck today Bev. Thinking of you. Lots of love everybody. Sheila xxx

funnyface
Community Champion

Re: Brain mets

Sheila, Glad you got started, so you can get this behind you. Hoping and praying for the best for you.

 

Bev, It's OK to be sad. You have had a difficult time since last summer. I'm praying the rads will knock the buggers for a loop while being kind to you. Then you can get started on vinorelbine. Saying prayers! Funnyface

Macie40
Member

Re: Brain mets

Hi Bev I hope you had a relaxing weekend in Tenby I can't wait to go there now we are going to the imperial hotel it is on a cliff top do you know it.probably won't be going far as I won't have the breath for up and down lots of steps but just to be away will please us even if we sit on balcony all day and play cards.
I am really hoping and praying that this is going to be your lucky treatment and give you your lucky break please keep in touch and know there is lots of love being sent your way.
Love Macie x x x

Bevlaar
Member

Re: Brain mets

Thank you all for your kind comments...so encouraged by them, you really keep me going ladies!  i just hope something starts working for me soon, i so need a lucky break.  No response from chemo since starting last july...,makes me think if I'll be the same with rads 😩 xxxxxxx

LemonDrizzle
Member

Re: Brain mets

Bev, you're bound to feel sad with all the news you've had to cope with over the last months. Glad you're able to go out for lunch and enjoy the sunshine - this will be the first of many. Good luck for tomorrow x
nicky08
Community Champion

Re: Brain mets

Hi Bev, yes it's understandable to feel sad and it's so difficult to be 'strong' all the time, as if we have a choice! Take it easy on yourself, have a lovely lunch today, enjoy it and I hope you are feeling refreshed after your weekend away. Good luck with planning tomorrow and the following treatment.
Sheila, good to know your treatment has started and that so far you are feeling OK. I know the fatigue from the rads can really knock you for six and I expect that builds up over the treatment time so, as with Bev, be kind to yourself.
Nicky x

Marie123
Member

Re: Brain mets

Why  do we feel bad when we feel sad ? It's allowed , lt's part of being human. Have a lovely lunch . Sending lots of positive vibes. Marie

Porkie
Member

Re: Brain mets

Morning Bev, you are allowed to be sad but I am sure when you start treatment you will feel better. I do hope the scan results go well so you can then start to look forward to going on your much awaited holiday. Enjoy your lunch today, we are all thinking of you.

Sheila, I am pleased that your treatment has started, I do hope that it continues to go well and that you get some amazng results. With much love to you both,xx

roxy12
Member

Re: Brain mets

Hi Bev, I had my first wbr yesterday and all went okay. The bed you lie on is a bit uncomfortable as it is a sort of metal but they put a pillow under your knees and it makes a big difference. you are only on the table about 5 to 10 mins. It took a bit longer with the planning c.t.

Feel okay today. Had a nose bleed last night and a slight headache but apart from that OK so far. I feel better now that tx has started. Good luck Bev and enjoy your lunch. Good luck Bev. Lots of love. Sheila xxx

belinda
Member

Re: Brain mets

You have coped so well with such a huge shock Bev, be very, very kind to yourself today and have a lovely lunch in the sunshine. X
Bevlaar
Member

Re: Brain mets

Morning lovely ladies...Starting to dread tomorrow's scan results and rx planning. But waking up on a bright sunny morning certainly makes me feel a bit brighter. Will take Laura for nice pub lunch i think and put worries on back burner for today. Just wish i didnt feel so sad all the time. xxxxxxxx
Mitch23
Member

Re: Brain mets

Hi bev

So sorry to hear your news. I'm thinking of you and sending you love and hugs. We'll be keeping everything crossed fir you

Much love
Jo xx
roxy12
Member

Re: Brain mets

Hi Bev, hope your scans show stability too. I had vinorelbine as my last chemo and it worked well.I had finished the course and onc thought I needed a break from chemo as I was having low blood counts etc. But it was a good chemo for me. I might have to wait longer than 6 months before I can drive again. We shall see. 6 months seems too good to be true! It is up to dvla isn't it.

Anyway let us know how you get on won't you next week. I will be thinking of you.

Lot's of love Sheila. Xxx

 

Bevlaar
Member

Re: Brain mets

Oh sheila I'm so pleased to hear your news. It certainly does seem encouraging. Lets hope your onc is right. Mine was quite encouraging too...if my ct scan tomorrow shows stability with the lung mets then i can probably finish the 6 chemo cycles of carboplatin. ..ive only had 2 so far. When that fails he's giving me Vinorelbine next because once ive had that he's then eligible to apply for eribulin for me. I know its not available on nhs here in wales and a course of 6 will cost £18,000 but there we go..thats my savings gone! Its too bad when i only live about 30 mls from English border! So unfair!

Yes onc warned me about se's as well mainly being the fatigue and that it would last around 6 weeks. And it would prob make me sleep nearly all day.
also...he did say that i wouldnt be able to drive for at least 12 months initially. ..maybe longer when they assess me after 12 months!
Hope he's wrong and its 6 months.

But let's hope we get many more years yet Sheila.
Lots love...bev xxxxx
roxy12
Member

Re: Brain mets

Thanks for all your encouragement, it really made me feel much more confident.

Saw my onc today and he also made me feel confident in my prognosis. He didn't tell me I was going to live forever but he did say that if we can get these mets sorted and keep the rest of my cancer controlled I could still be looking at years. He said he had several patient who were 4& 5 years post wbr and were still doing fine!

He said the main SE was fatigue. Nausea can happen but not everyone gets it and if I do I just need to tell the staff and I will get some meds for this. I asked how long I would be unable to drive and it could be only 6months as I haven't had any seizures and not many symptoms. I am to see him in 2weeks which was already booked. Apparently, he requested eribulin for me the day before it was taken off the drug fund and it has gone to appeal. Hoping the faslodex works but next plan already in place if not.

As you say Chocolates, he is FAB. We even had a laugh! I think I will get a sticker for my car saying I LOVE MY ONC.! Tx starts next Monday so not long.

Bev, I hope you are feeling better now. I know it is early days since you were DX. It is 2 weeks for me and I am coming to terms with it now. Good luck with your treatment and remember what my onc said about people still doing fine after 5 years. And who know what new treatments will be available then.

Lots of love to everyone. Sheila. Xxx

Bevlaar
Member

Re: Brain mets

Thanks chocolates for the warm words of encouragement. Ive been so scared this week. These uggers seem to be popping up fast since January. First into the other lung now brain...seems to ve spreading quickly.
Do you really think its a good sign that i feel well though?
Sheila...im glad youre starting your tx soon too.My rads will be 5 sessions over 5 days probably starting in 2 weeks. I just keep remembering John Hartshorn a couple of years back who had a massively brain tumour and when they found it he,a it was so bad they told him he was close to death ....10 minutes i think they gave him! He is fine now.
I dont think it was a secondary but it just shows how well radiotherapy can work. So let's keep hopeful

Good luck to all of you and enjoy your weekend xxxxx
funnyface
Community Champion

Re: Brain mets

Sheila and Bev, Wishing you both the best! Funnyface

LemonDrizzle
Member

Re: Brain mets

Bev, hope you manage to get a good sleep tonight x
Chocolates
Member

Re: Brain mets

Bev, you are so in my thoughts at the moment. You have such strength inside you that you will get through this. As I read through your post I noticed two things, firstly you feel well. That's such a good sign as to you facing this next challenge. Your body is ina much better position. Secondly your onc is happy for you to go away. Bev if he thought this was the end he would not be saying this. So rest up and take this next stage as it comes. You can do it. I really hope your hospital money comes through. You so deserve it. With you all the way xxxx
Sheila, your onc sounds fab. Really on the ball and not wasting any time. Also he notes you are well and ready for action. Sheila, you've faced worse. You were so unwell last year, so this in comparison is a daily trip to the hospital for 10 days. I realise there is a bit more to it than that but you are ready. I hope the treatment is kind to you. Let us know more tomorrow once you've had yr appt.

Huge hugs Sheila and Bev xxxx
LemonDrizzle
Member

Re: Brain mets

Great to see your onc is seeing you so quickly Sheila. Hope everything goes well tomorrow x
roxy12
Member

Re: Brain mets

Hi Bev, 

Well had MRI on Mon. My onc rang me this evening about 5_45. He asked if it was a good time to ring and he wants to meet me tomorrow at the radiotherapy unit to plan treatment! He says there are quite a few tiny mets as well as the one causing my eye problem (these werent seem on ct) and because the rest of my cancer is under good control at the moment he wants to give me high dose of WBR in 10 sessions! Not what i wanted but I trust him and he will go through everything with me tomorrow as the phone isn't ideal for a consultation.

Hope you are OK. I've said before, tx has come a long way recently. We just have to keep strong.

Lots of love Sheila xxx

Barton
Member

Re: Brain mets

Bev, just adding my good wishes to everyone elses. Please keep in touch when you feel up to it, but take it easy and look after yourself. Many gentle hugs. Barton.x

Bevlaar
Member

Re: Brain mets

Yes macie off to tenby on friday straight after my ct scan at 9.30. Weather looks good but cloudy but warm. So thats good. Xxxx
Stillhere
Member

Re: Brain mets

Bev, thinking of you and wishing you strength in the next few weeks. Big cyber hugs xxxox
Macie40
Member

Re: Brain mets

Sending you love and massive hugs Bev I will be thinking of you on yet this next journey.
By the way have. You been to Tenby yet to have your break before you start your next treatment we are all keeping our fingers crossed and wishing you well love Macie x x x

Marie123
Member

Re: Brain mets

Thinking of you  and will continue to send get well vibes . Marie

stresshead
Member

Re: Brain mets

Bev, just want to echo what everyone else has already said. Wishing you the best of luck with the next lot of treatment..its never easy facing yet another round but we're all with you. Hope the holiday comes off. I had just got around to thinking about a holiday abroad and then got dx with pilmonary embolism so no chance!!.

Much love.xx

Bevlaar
Member

Re: Brain mets

Thank you all so much. My planning for RT will be after next wednesday  when I'm  next  seen in  clinic by the whole team. Then the following  week I'll have  radio for 5 days...and will lose all my hair...who cares??

A baldie for my holiday. Onc is happy for us to have the holiday providing i am still this well and symptom free in june. He has given the ok to fly too.

 

Thats the bizarre thing...i feel so well at the moment.  Thats what makes this all seem so unreal.

After i have had vinorelbine he is going to apply for funding for  eribulin but not hopful as less than 6 people in 100 get the funding here in wales.

But my family have said they will fund it for me! I insisted that i pay at least half but at the moment  my mum is insisted that she's  going to pay it all! But I'll  soon talk her out of that lol!

I am stilk awaiting the report from solicitor  regarding my investigation  and litigation  with the health  trust and have been promised that this week with the hope of some competition so that will pay for treatment  too if forthcoming. Speak soon ladies...hope you are all well  and enjoy the weekend! 

Love bev xxx

funnyface
Community Champion

Re: Brain mets

Bev, You must be exhausted...so much to take in and sort through. We are hear to chat with if and when you need too. If they decide on vinorelbine, it was kind to me. Rest up and concentrate on you! Hugs and more prayers. Funnyface

roxy12
Member

Re: Brain mets

Just want to say Bev that I am thinking about you. Don't despair, treatment is so much better now. Did onc say why you couldn't have stereotactic? My onc has put me forward for this but this was just on CT results. May change with MRI? I think the decision will depend on the neurologist in the end. Hope I get to hear something soon.

When does your tx start? I hope SE are minimal and you are soon on the mend.

Will be holding your hand when you are having your treatment. Lots of love Sheila. Xxx

helen44
Member

Re: Brain mets

Sending you positive thoughts and big hugs Bev. I hope you get the best treatment available -you deserve it xx
LemonDrizzle
Member

Re: Brain mets

Thanks for the update Bev. Take good care of yourself and when you feel up to it let us know how you're getting on. Love to you x
belinda
Member

Re: Brain mets

Thank you for letting us know Bev. Quite understand you must be exhausted, there is so much to take in and prepare for. Even though you won't be posting please remember we will all be thinking of you, wishing you well, supporting you through your treatment and whilst you get your strength back after WBR. Sending you love and strength. X
Bevlaar
Member

Re: Brain mets

Just to updatd you all. I have 4 lesions in the brain. One is 3cm...2 are 2.4cms and 1 is 1.7cm. One is on the right the others on left near back. But he said that wasnt the true size of the tumours as they also contain fluid which makes it look bigger.

Cyberknife/stereoractic radiotherapy out of the question so it'll be WBRT which will cause total hair loss and fatigue. Radiotherapy will be over 5 days but will be going next week for planning first. After that will resume chemo again but wont know which one till ive had results of my ct scan on friday. Results next wed. 

Onc did say that theres also no guarantee that the radiotherapy will work because of the way this cancer is behaving...borderline triple neg. Plus the fact nothings worked up to now.

And if my scan this friday shows the chemo is not working again either then itll mean a change to Vinorelbine.

Also i have to inform DVLA as i wont be driving for at least a year.

On the plus side (if there is one..) he said providing my symptoms dont worsen by June then i could still possibly fly to Greece for 2 weeks. ..lots of ifs.

I wont post again for a while as I'm exhausted but thanks everyone for your support xx xx xxxxxx

Bevlaar
Member

Re: Brain mets

Thanks pam. Will note all this and take it with me today xxx