Fibrolamellar

Hi Sandhills and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I don't have the type of cancer that your daughter does but I noticed that you hadn't had any replies yet. Responding to you will 'bump' your post back to the top of the discussion list where it'll be more easily seen.

I've searched the group for others who mention fibrolamellar and found this post. You could reply to the poster if you wanted to ask her any questions.

It would be great if you could pop something about your daughter's diagnosis and treatment so far 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.

x

My husband has fibrolamellar liver cancer and was diagnosed in 2008 when he was 39. He was able to have a liver resection but had lung mets 2 years later. He’s had many operations and treatment over the years for various mets. He’s not having any more surgery because he has a number of tumours, thankfully growing relatively slowly. 

He’s looked after in Birmingham. He’s had folfox chemo in the past. He’s currently on Lenvatanib tablets and used to take sorafineb. I believe immunotherapy is an option too so hopefully you will be offered something for Katie very soon. 

take care xx

Thanks for your reply. Your husband seems to be doing really well. 

Christie’s have replied that we (in Blackpool) are out of their area and suggest a referral to Preston instead. Spoke to the nurse at Blackpool and she said that the Christie’s referral was because Katie needed a specific chemotherapy treatment which Blackpool cannot do. 

So frustrating. Katie was identified with liver cancer in Majorca in early November and we are no further forward. Hopefully, we might get some answers next week. 

So sorry to hear of this delay Sandhills. I know I would be getting very frustrated and angry and I really feel for you. Keep pushing, it's what we have to do frequently. Whoever is currently in charge of her care needs to get you seen by an oncologist at a tertiary unit (big regional hospital) that will accept her asap. 

Hi

Just to let you know that we finally have an appointment with an oncologist. This coming Friday…in Leeds…we live in Blackpool !

I hope you got something useful from your appointment, especially with that long round trip. I hope that the Easter weekend is being kind yo you. It helps when the weather is better.

Hi

Well we never got to Leeds ! Got as far as Rose Grove in the train and the conductor said that the train was terminating due to a body on the line at Sowerby Bridge. To cut a long story short, managed to get back to Blackpool and had a telephone conversation with the oncologist we were due to meet. 

Plan is for Katie to have treatment at home via 2 per day Capecitabine and one per week injection of PEG Interferon. 

Thats the plan but have heard nothing else since the phone call. 

Happy Easter