Stage 4 gall bladder

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Hi I'm new

Just diagnosed with stage 4 gall bladder cancer/bile duct they are not sure of the primary source. Just a lymph node nearby says I have cancer.

Is anyone else on chemo and immunotherapy?

I am struggling thinking about how to deal with side affects from both. I look and feel well apart from a bit of ache in my abdomen.

No start date for treatment.  Because its rare worried they are using sledge hammer to crack nut.

Anyone hot advice how they dealt are dealing with it?

  • My mum was diagnosed end of December. It has spread so not able to have surgery. She is on cycle one of chemo and immunotherapy. It's been such a shock I can imagine for you too. Hope you are well and find some people who can help. X 

  • Jk90 thank you so much for replying. Did you mum's diagnosis happen quickly and then how quickly was she in treatment?  What chemo drugs and immunotherapy drug is your mother on. When did she start and how is she coping? Sorry for the list of questions. If you don't feel like answering that is jot a problem.

    You are quite right a roller coaster of emotions for the person who has it and the family around them.  I am certainly blessed with my network team.

    • It has spread in me too so no surgery.  
    • Hope your mother's responds well and she stays positive. 
  • Hi I was diagnosed with Bile duct cancer in 2020 has spread to liver lungs and lymph node.  

    Told it was terminal 

    i have had chemo treatment for 16 months initially with Cisplatin and gemcitabine 

    then just the gemcitabine. Tolerated them not too bad. Stopped the chemo in November tumours grew slightly. 

    I am now going on a clinical trial  for Ivosidenib 

    as I heave the IDH 1 mutation. 

  • She was back and forward to the doctors. And twice to a&e. The second time they gave her a CT scan that was on the 28th December and they knew it was cancer. Its in her liver, gallbladder/bile duct and lining of the abdomen. They can't cure it but offered chemo. They done a biopsy to confirm it which took a few weeks. She started chemo on 31st January. She's on Gem/Cis chemo.  And immunotherapy is Durvalumab.  She had a not bad day the other day and went to hairdressers but yesterday she slept the whole day almost.  And today she's good again so just taking each day as it comes.  The doctors advises to eat little but often. Have a good diet and keep up exercise. Walking etc.  Please try and stay positive as hard as that is. Keep us updated how your getting on. X

  • Hi how are you. Your post gives me hope. Where you diagnosed initially with terminal? My mum is on the same chemotherapy as you. X

  • Just got my date fir first round of treatment, any advice what to do between now and then?  Also it is on the Thur,  how likely am going g to feel well enough for the theatre on the sat.  Lical

  • The doctors just said to eat well and stuff to keep strong. I think it really depends on the person. My mum was completely fine the following day then sick the day after but others are opposite.  They mentioned something called pre- habilitation but my mum didn't have much time. If you put it into Google it should come up spme things from macmillan and cancer research. Xx

  • Many thanks for that.

  • Hi I was told it was terminal on the day of diagnosis which was a huge shock. I wasn’t even going to try the chemo but was persuaded by family to give it a go. I was quite ill at first but they reduced the dose and eventually I began to feel better.  I definitely helped with the symptoms and I put weight on. Felt a lot better for a long time. 

    I had a 3 month break from the Chemo from November. The tumours in the liver stayed stable but th lung and lymph one grew. 

    Imnot on any treatment at the moment. I’m feeling very fatigued. Staring on the targeted therapy trial next week. 

     

  • Oh wow that's so good you got the chemo. How have you been coping? My mum's 60 my wee boy is just 7 months old so hopefully the chemo really helps. Xx