Lonsurf

Hi

If you use the search icon just up at the right hand side you will find some people’s stories. When it works it seems to really work for you so it’s certainly not without hope and one lady did come back to say her husband has achieved stability on it . 
However if your mum is operable I would certainly be enquiring into that a bit more to find out if this is just buying time as seems to be in a lot of situations until the intensive care/ high dependency beds are available again . Certainly in all my mum’s liver operations she has spent a few nights in high dependency as she had an epidural. Not sure if they still use them . But they did monitor her closely for a few days then she transferred to a surgical ward . I could see how they have been delayed currently but as things improve you could certainly check to see why her treatment approach was changed and could she be reviewed. Or you could ask for a second opinion . 
Our helpline staff might be able to help too . 0808 808 0000. 

So many operations have been delayed just now but even on the forums we are seeing some diagnoses and treatment plans starting up again . 

How is your mum keeping within herself ? It’s very , very stressful just now so hope we can support you both as you work your way through the details but keep advocating for her . 

Not easy on you either as you do your best to try and represent her but it is worth it . We are here for you too .

Take care ,

 Court 

Hi court, thanks so much for your reply. I have read about some people’s experiences and it is very mixed. I agree with you about enquiring more into the operation. It was only just after Christmas she was put on her second round of chemo and had meetings with her liver surgeon and everything seemed good, she only had 3 rounds of her second chemo and was told she needs to go Lonsurf around 3 weeks ago, and from what I’ve read Lonsurf seems to keep coming up as a last resort.

Personally I think that she could have just been put on this to keep her away from hospitals at the moment until she can have her operation but I’m not 100% sure. I have asked her to get her oncologists number or email for me to call and find out. 

After taking the treatment my mum is very unwell for the first week but after that she seems so fine! She’s eating, she’s up and she seems happy. 

It does seem like a lot of people have been placed on Lonsurf recently and I’m wondering if it is because of what’s happening in hospitals.

Xx

Hi ,

I was thinking along similar lines as yourself . Is it taken in tablet form ? From what people have been reporting there is a bit of deviation from the normal protocols to try and get safer ways of taking chemo , reducing hospital visits etc during covid . I think it would help you to chat to your mum’s oncologist if she was up for that . See if they are just trying to develop a holding pattern to get the surgery up and running . 
My mum had a scan then MDT meeting before deciding chemo / surgery changed so it sounds as though this was more a change due to circumstances and it’s perfectly reasonable to want to make sure that’s the case and if she still wants to pursue surgery she should definitely make her wishes on the matter known . 
She actually sounds as though she has tolerated it well though . Well done here . That seems half the battle with it .

Also great you are keeping on top of it all . We certainly made polite enquires when needed .

Have a good night .

Court