Looking to connect with people in similar situation

Hi Wendy,

I'm sorry to hear of your fairly recent diagnosis. I too have stage 4 gallbladder cancer. I was first diagnosed in 2016 with stage 3 but it metastised in 2020/21 and then again in 2022, after surgeries and chemotherapy I'm currently on the 'no evidence of disease' meaning no new tumours.  

It can be a relatively lonely cancer as it's pretty rare and the outcomes aren't very favourable but I'm on year 8 and I'm still living with not dying of cancer. Feel free to reach out anytime .

Colette 

Hello Colette, thank you so much for getting back to me. It's been a tough time; I've lost quite a bit of weight due to cachexia, so I haven't started chemotherapy yet, but we're planning to begin in a few weeks. I would really appreciate a chat—do you prefer to communicate through this forum?

I totally understand how difficult it all is, I didn't know what a gallbladder was until I had mine removed due to it being 'chocker full of stones' yes that was the words used by the surgeon lol 

I've had chemotherapy twice, 6 months of it in 2016 and again 6 months in 2021 so I'm happy to give you any advice on dealing with that. 

I don't know what cachexia is I'm sorry?

But yes I'm happy to chat on here or if you prefer more privately I think you can add me as a friend? 

Colette 

Hi Wendy hope this reply reaches you as I am not great on this platform.

I was diagnosesd with bile duct cancer stage 4, Back at the beginning of Feb. Started treatment on the 22nd. Immunotherapy and Chemo. So far so good.  Though I have no idea how it is helping.  CT scan 29th of May. My biggest problem has been my weight loss 16% in the last 4 months which having looked up what cachexia is, sounds like I.might be classed as that too, though no  one has said!  Recently we have managed to maintain weight (last 2 weeks) as I am on digestive enzymes as they tested my stool and found I was severely lacking them. 

Fingers crossed.  Positivity and mindset is very important.

Hope you have a strong network to support you. 

Hi Wendy 

I was diagnosed with gallbladder cancer with liver metastasis on 17th April.

To say it was a shock is an understatement as I had no symptoms other than some side and abdo pain.

As it stands for now I do not have the option to have surgery so my treatment plan for the next 24 weeks is chemotherapy and immunotherapy.

I started the first of 8 cycles yesterday.

I know it has been so difficult locating others in the same situation as it is such a rare cancer but luckily have found Colette and Wee Scot’s lady through this platform and have really benefited from chatting to them. 

I can see they have both relied to you already and I am also happy to chat anytime.

I am from the Northamptonshire area but am happy to join a virtual coffee session if one can be set up.

sending love and positive energy and thoughts your way x