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

I took have just been diagnosed with gallbladder cancer stage 3. Awaiting operation in next month hopefully.

It's scary and confusing

Feel free to chat

Hi Rhino57

I'm Colette and I've been dealing with gallbladder cancer for 8 years now believe it or not! Mine started in 2016 when I had it removed and they found a T2 tumour. I went on to have a liver resection and 6 months of chemotherapy.  Mine then metastised in 2020 and I'm now classed as stage 4. I've have been incredibly lucky that each time mine has come back I've had surgery to remove it from my bowel abdomen and peritoneal cavity (yes 3 surgeries since the liver resection). I went on to have a further 6 months of chemotherapy in 2021 and I'm currently in the 'no evidence of disease' club.

Please stay positive and even though we are a small group we are pretty welcoming to all xx

Thanks for your reply I am so nervous as my partial gallbladder removal was my keyhole surgery. Now it's fully opening me up. 

Trying to stay positive and chatting with people in the group helps me.

Thanks take care

Best of luck, I know how scary it all is, I have had open surgeries 4 times now, for the gallbladder cancer, my body is like a jigsaw but the fear is worse than the actual surgery and recovery. 

My advice is listen to the surgeon, listen to the nurses but most importantly listen to your body and be kind to yourself.

Thanks for your support this forum is great it's helping me come to terms with my cancer.

The consultant/surgeon has been great really taking time to explain to my wife and daughter on Monday.

He seems to really moving things along, advised on the Friday, Consultant appointment Monday, bloods, pre-op assessment 1 same day, CT scan again same day. The key worker nurse chaperoned us to appointments, the consultant arranged the CT scan himself.

Tomorrow have second pre-op and Wednesday my anaesthetist appointment with the lung and cardio assessment.

Following week meeting with the Macmillan nurse for one to one then after that their monthly community meeting at Maggie's. Following week have the MRCP scan but rather than travel to Manchester it's at the local Oldham Diagnostic centre really local 

Thank you for your advice and kind words