NUT carcinoma

Hi TopC 

So sorry you have found yourself here  

I had to look this up. 
I’ve bee here about five years and I can’t recall anybody posting about this. 
I did a quick search for you and came up with a blank I’m afraid. 
Maybe a social media search for a support group might help. 
I hope you find somebody to talk with

Meanwhile we can help with chemo questions if you want to ask something 

What chemotherapy are you on? 

Hi Beesuit,

Thanks for reply. I am on palliative carboplatin and docetaxel. Due to complete cycle 6 this week then a few weeks of a break before ct scan on September. I have looked on FB bit can only find a support group based in the US....nothing for UK. Will try again. 

Docetaxel is awful. Poor you Because it’s so rare there might not be one in the U.K.  see what the USA one has to say? 
Macmillan has a chemotherapy group that might be useful too. 
It’s here 

community.macmillan.org.uk/.../chemotherapy-forum

Hi hello from me as well sorry I’ve not heard of anyone either. I had cisplatin chemo which was ok for me I was lucky. But happy to help if I can.  
Or just have a rant in here it’s a good place to rant. 
ww never judge as we’ve all been there. 

Hazel x

Thank you. Will contact US group to see if they have any contacts. 

Hi RadioactiveRaz...thanks for message. Good to know I can off steam if I need to. So far have been ok, had some low days but have a great family and friends network around me. My med team and doctors also have been fantastic.

Hi it helps to have a good medical team around yiu as well as family. 
hazel x

Hi TopC , I just came across this thread after my recent diagnosis for the same type of cancer (NUT carcinoma). I hope you're ok... Struggling to know where to start...

Hi Top C.

Yes, there are several online support groups in the UK for people affected by neuroendocrine tumors (NETs):

1. **Neuroendocrine Cancer UK – Online Community**: They have a closed private Facebook group for patients and supporters in the UK. There are also separate groups for patients and family/supporters. You can find more information and join through their website: [Neuroendocrine Cancer UK](www.neuroendocrinecancer.org.uk/.../

2. **Regional & Themed Online Meet-ups**: Neuroendocrine Cancer UK hosts quarterly online support group meetings via Zoom, specifically for those living with NETs in the South of England. You can check their events page for registration details and upcoming meetings.

These groups can provide valuable support and information from others who understand what you’re going through.

Hope it helps.