Cisplatin and Etoposide

Hi Katkinnie, I’m a well differentiated Lung NET with Liver Mets. As I had plural deposits I was inoperable so had Cisplatin and Etoposide on a 3 weekly cycle stating in August 17.  I was lucky as I had few side effects, metallic taste and my hair stopped growing, but it held me stable for a year. In May 18 my Liver tumours showed progression so I had FOLFIRI but after 3 cycles  it was still progressing so I went onto Afinitor.

I had a PICC line, similar to a Hickman so I’m sure they can us that, a real blessing.

It very much depends on your type of tumour and the cells it is composed off, Chemo works for some but not for others. NETs are very complex.

Please ask any questions you may have and hopefully you have found netpatientfoundation.org which is an invaluable site. I assume you are under a specialist centre and have access to a NET nurse. I found them very supportive when I was first diagnosed 

Good luck on your journey x

Thanks Christine. I have managed the folfiri fairly well so hoping for the same with this next lot!! Read a lot of people have lost their hair which I haven't on folfiri so keeping everything crossed! First one on 20th Dec so not sure how I will be over Christmas. I am St James in Leeds and yes have a very good NET nurse. Hope all goes well for you x

I think as you managed with few side effects on FOLFIRI it will be similar with Etoposide and Carboplatin. I had Steroids for 4 days and anti sickness, I took them in case but I never felt sick.

Leeds has a great reputation, my son lives there, The Royal Free direct my care but I have all my treatment at my local hospital in Suffolk, saves a lot of traveling.

Hope all goes well and you have a good Christmas x

It’s also reminded me that I must update my profile 

I have my fingers crossed that you are right   Leeds have been fab - I have had all my surgeries there but have my chemo in Scarborough as like you it is closer to home. Hope you have a good Xmas too x