Hi I a have similar story.i am 43 was diagnosed with TNBc 3 in 2017 after "successfull treatment I was diagnosed 2 years after with lung mets.that was treated successfully with chemo in October 2020 I was diagnosed with brain tumors " with.4.i had radiotherapy which was awful now I am on chemo tablets.which results i will see next week.

Your wife needs to rest a los. I am at home home shielding but planning back to work on 8.8.but I will see i am so week some days.

If you want you can chat with me.

Denisa

You are so strong , good to read someone is really doing everything they can. So proud and I don't even know you.

My husband went through a lung labecotomy in 2019, all 11 nodes were removed, he couldn't do all 4 cycles of chemo, just managed 1. We naively thought we had beaten it! His been taking headaches since September 2020, his balance has been getting worse too and his memory. His GP told us it could be is age his only 52...then last week he finally managed to get the CT scan we've been asking for, he has 2 mesatises in his brain. One of which is putting pressure on his tube that provides oxygen and blood to the brain and could be very dangerous. We are now waiting for a MRI to see what the next steps will be. We have 2 girls and I shattered my leg in New years day...so can't take the Raines like I did last time.

My husband doesn't want to go through any treatment, his on steroids 6m atm.

Not sure how to pursued him...can anyone suggest how to manage his moods/temper!!! If this diagnosis can be wrong/managed

Thanks

Mrs M

Hi Richard 

Hope you're ok, I know how hard it is being in the position you are in, my wife (39) was diagnosed in October with advanced breast cancer after being clear for 10 years and in November an MRI confirmed it had also spread to the brain. The MRI showed 5 large lesions and over 30 smaller ones. Her subtype isn't triple negative tho it's Her2 negative so a difference there.

I saw your post and thought I'd share what we are going through. We were offered palliative whole brain radiotherapy to relieve symptoms and had a short course of this in early December 20gy, 5 fractions. My wife's symptoms at this point were headaches , uncontrolled sickness and balance problems. 
My wife has coped really well after it, about 50% hairloss 3/4 weeks after and an MRI in Jan just now has shown a reduction in overall tumour volume and swelling in the brain. 
She's had dexamethasone 4mg / day since Dec and we are looking to try and reduce this as her mobility is now very poor, unable to stand walk or sit up unaided. We have been informed it's likely the long term use of steroids that's caused this so worth watching out for and asking for advice if you see or feel the same. 
For help you need at home dependant on how well your wife is there's opportunities with home assessments, nurse visits and physio so worth asking for what's available as you see fit. 
As I am my wife's full time carer now, I've found routine at home and looking after yourself too is really important and helps keep everything in balance. 

best wishes to your wife and family, 

Chris 

Hello I am only 43  and was diagnosed with 4 brain mets in October 2020.I had radiotherapy which doesn't  help me at all despite their promises.anyway I was prescribed dexamethasone 4 my too.but I have decided to reduce it to 2 and stop it all because it feel like I'm rubbish.but you have go to the doctor to speak to reduce dont leave your wife to suffer.

I am taking only chemo tablets now I am feeling well.i return to even to work end of March.only 2xweeek but I need to do something.

If you need to ask just text me

Denise

Hi Denise 

thank you for the advice, we are reducing dexamethasone based on guidance now from the nurses so will see how it goes - fingers crossed. Hope it goes well for you and best of luck with returning to work. 
 

Chris 

Thanks everyone, nice to see so many replies but also not nice that so many people are going through this.

A lot has happened in the last few weeks but at the same time very little, after pulling some strings we managed to see a specialist in London a few weeks ago who is putting her forward for cyber knife if the planning MRI doesn't throw up any surprises, he said that on he estimates 80% chance of giving her 2 years which is a significant increase on the "months" she has been given so far. That sais we saw her ocologist today and she says she'll be very surprise if the more detailed planning MRI doesn't show up more lesions limiting what cyberknife can do... time will tell!

The big issue we've had is her stomach and lack of bowel movement, she ended up being admitted for a week without much luck before the palliative care team took control and after trying everything under the sun, things started flowing 2 days ago, after 5 weeks!!! They did another abdo xray today and planned a CT to see how things are looking, they are also doing a referal to the surgeons to see if they are willing to do anything to help which we are told is unlikely as they won't giver her a general aneasthetic.

As we are now 4 weeks post WBRT, they are booking in an MRI to get a new baseline and because she is very shaky, could be that it's worsened or the steroids, she is down to 10mg from 16 but they don't want to lower it any further until MRI is done and results are back in.

In addition to that we have told they kids that mummy is going to die, this is based on advice and my wife's training as a peads palliative care nurse but felt so wrong to me! They don't deserve this!

Goodness me that sounds like a really touch month or so, you're doing well keeping positive about it all too. 
My wife had an MRI 6 weeks after WBRT and it showed an overall positive response with reduction in tumours so we were pleased with that. She also has small shakes in hands and arms which will be either steroid linked or from damaged good cells potentially they have said. 
Good luck with the MRIs and fingers crossed you get the news you need to go forward with the cyber knife. 
I think you did well letting the kids know although it's so difficult to do it's always best being open, that's what we've done too. 
Chris 

Hi you know my story for sure and I am sorry for your wife and your family.nobody deserved to be told when is going to die the doctors are not god.And there is so many hospitals and clinic you can go please don't give up.i am changing hospital because even with 4 mets they are not willing to do surgery.had just radio but was no help.

Denidel