Brain mets

Newly dx yesterday and seeing Onc and team this morning. What questions do you think i should be asking? Im so scared and the family are desolate. …again!!!
How many of you have brain mets and how long ago were you diagnosed? I dont have any symptoms yet apart from a few mild headaches in last 3 weeks and 1 spell of giddiness last week.
What else can I expect?
Love to all of you. Bev xxxx

Just a few thoughts…use or discard as you wish…it has to be what you want to know… What are you suggesting as treatment? why. what will that involve …what are the potential benefits/risks…how likely is that to provide benefit and how much…will it be combined with other treatment? If money was no object what would you recommend…?availability of cyberknife or equivalents to Welsh patients and would it be appropriate…likewise availability of surgery and appropriateness…why etc.

?ask about second opinion and where he would recommend.

What if I dont have treatment…what will happen…what support…etc.

?involvement of palliative care etc.

Good luck.xx

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sorry process

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

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???