Very worried

Hi MikeyC 

Being told that your wife only has one line of treatment left and that she might need to start on a clinical trial must have been a very difficult thing for you both to hear.

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' your post back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your wife's diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Sending ((hugs)) to you both

Hi Latchbrook, thank you for reaching out it means a lot.

yes the news has come as quite a shock, especially when her macmillan nurse suggested there was a fair few other options left to try! 

I have added the diagnosis to the post.

best regards 

MC

Hi Mikey

I have the same diagnosis as your wife except I do not have it in my liver

I was diagnosed in 2022 but it’s almost certain I had it in 2018 undiagnosed 

I started a target drug called Abemaciclib that worked for 2years but I’m no longer responding to it so I’ve started on capecitabine chemo tablets. I’ve just started cycle 3 of it but I was told I would be on this until I until I stopped responding  to it but I don’t ask ‘what next if it doesn’t work’

Could I ask why she has left her current treatment 

My only advise is to listen and take advice from her oncologist but in the meantime stay positive, try not to dwell (hard I know), healthy diet and alternatives

I also read an amazing book that gave me so much hope called Radical Remission by Kelly A Turner she has also written Radical Hope

Sending love to you both

G

Hi Momma G,

Thank you for taking some time to reply to me.

I am sorry to hear you are also dealing with this awful situation, it’s an emotional rollercoaster that’s for sure.

The current line of treatment which is called Eribulin, has stopped working that’s why it has been stopped, unfortunately the previous 3 others had stopped working relatively quickly. Previous treatments have been Ribociclib & fulvestrant, paxlitaxol, denosumab. 

When you say alternatives, can I ask what you mean by this? We are open to anything at this point.

I have several book along the lines of the one you suggest but when I first bought them I found them very hard to understand and this was early in the diagnosis so I couldnt read them with having a breakdown.

Thank you 

Hi Mikey,  

I'm so sorry to hear about your wife. 

If your wife is er+ one drug you might want to ask your wife's oncologist about is Capivasertib.  It was developed by the institute of Cancer Research (icr) here in the UK and I believe it was only approved a few months ago for the UK (fda approved before that).  You would need to check that its suitable for her as the little I can read suggests its for er positive/her2 negative with certain mutations so I'm not sure if its suitable as I note you said she was her2 low.  I'd hoped I could go onto it when eribulin stopped working recently but unfortunately my er status is now too weak for it to be an option.  Given its very new drug its possible that not all oncologists are aware of it yet.  

The ICR are amazing so it's also worth keeping an eye on their website in case they announce in the future anything that might be helpful for your wife.

Hi Aussie lady and MikeyC 

Capiversitab has been approved by the UK drugs regulator but is not yet authorised for use by the NHS. The decision on it is expected in March 25. I assume that means it can currently only be offered privately or through a trial. The UK regulatory approval is, per the notice on gov.uk, “for patients with advanced hormone receptor (HR) positive, human epidermal growth factor receptor 2 (HER2) negative breast cancer which has one or more abnormal “PIK3CA”, “AKT1”, or “PTEN” gene, and does not respond to other anti-hormonal-based therapies.”

Hi Aussie Lady,

Many thanks for taking the time to reply to me, we are currently awaiting news on a possibel trial, fingers crossed this becomes and options quite qucikly. But we can also ask about the treatment you have suggested.

Thanks again & Best Regards

Michael