Newly diagnosed

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Hi I am 43 years old and yesterday was diagnosed with Metastatic gallbladder cancer which has infiltrated my liver.

I have no symptoms other than abdo and side pain. 
I went to work as normal on the morning of 2nd April and ended up in A&E with the pain.

They initially suspected gallstones but this did not show on ultrasound sound so I had CT, MRI and liver biopsy and yesterday was given the devastating news that I have advanced adenocarcinoma.

I have been told that my treatment will involve chemotherapy but only to slow the disease and not as a curative.

I am numb with shock. I am seeking a second opinion but just need to talk to someone who can relate to how I am feeling.

My family and friends have been great and I am trying to remain positive but not sure how I do this anymore.

  • Wow!  That's is interesting. You got through it so quickly.  I only get weighed at my pre chem day which is 2 days before treatment day when they also take bloods to check I am healthy enough to take the treatment.

    Never heard of Frusimide.  Sorry.

    Yes, the pain comes I feel from the inflammation,  but I ease that normally with paracetamol,  very occasionally with Naproxen(though the pharmacist would prefernI use co codemal - Sorry can't spell. But that makes you constipated 

    Sleep is tricky the first 2-3nights whilst taking the steroids. I also have a hot water bottle to cuddle in the middle of the night which I find comforting.  Drink a minimum of 2lts of fluids daily , if water take with lemon juice and a touch of hymalyn salt to help balance your electrolytes.

    I found constipation the worst side effect, make sure you counteract that in whatever way suits you..

    At first it was the 2nd day after treatment which was the day I was washed out, rest.  Also the steroids?  Plus lack of sleep made me very emotional. Just remind yourself tomorrow will be a brighter day. 

    Now I am finding it is the 1st day. 

    Take care, be kind tonuourself. X

  • Question, are you only having chemo?  Or immunotherapy too?

  • Thank you for the advice.

    I have noticed a bit of constipation already so I will take something for that today. They did give me a lot of drugs to take home with me. Some anti sickness ones and some for both constipation and diarrhea and some mouthwashes. 

    Luckily the pain has settled this morning the hot water bottle did help overnight. 

    The frusemide was to hep me pee because during the day I had got a bit overloaded with the fluids which is why they weigh pre and post treatment on the day. 
    I guess maybe a different process in different hospitals?

    I had oral pre meds (steroid and anti sickness) then some pre hydration fluids over 1 hour. Followed by the Cisplatin over 1 hour. Post fluids over 30mins then the Gemcitabine over 30mins followed by Durvalumad over another 1 hour.

    It was all very quick one straight after the other no delays in between.

    Next week on day 8 I will just have the chemo ones and the following week I will just have the immunotherapy so will be in once per week now for the cycles. 

    How are you feeling after the start of your 4th cycle? I am thinking the side effects intensifies the more cycles you have?

    Suzy

  • Interesting,  I have 1ltr fluid over 2hrs.

    Oral steroids  never had oral antisickness.

    Same drugs, starting with the immunotherapy  funny can't remember how long that takes. 

    My schedule is day 1 both, day 8 just chemo, day 15 rest.  Then start the next cycle.  Are you saying you don't get a break at all?  Gosh!  That might be tough.  

    They say it takes the immunotherapy 2 cycles to kick in. Yes I think it is intensifying a bit.  Feeling brighter again today, still uncomfortable.Time for some meds!  Also this is this first time yesterday that I was running a temp of 37.5 for a while.  Glad it didn't go higher, or you are told to call the hospital.  

    Yes I got sent home with a load the first time , thankfully I didn't need the antisickness or the other. But then I also use homeopathic remedies to help there if needed. X

  • Sounds like it may be done slightly differently between the hospitals.

    My chemo cycle is the same as yours (day 1, day 8 then day 21) but my immunotherapy is every 2 weeks which means there will be weeks that it lands on the same day as the chemo but other days when I have that on its own. It does make it slightly more confusing but that’s how mine has been scheduled.

    I hope your temp came down and you are feeling better today?

    May I ask what homeopathic remedies you take?

    Thanks,

    Suzy

  • Yes, I am sure treatment plans differ person to person.

    Slight temp again yesterday eve but OK now.  Bad stomach cramps as my bowels sort themselves out. 

    Nux vomica 30 for nausea. 

  • I wanted to ask if you know when you will be rescanned again? 
    I think my oncologist mentioned something about it being halfway through treatment just wondered if it was the same for you?

  • Sorry I thought I had replied to this question.  I am being rescanned tomorrow the 19th May but not seeing the consultant until the 24th June.  I hate the way the leave you so long in limbo to know the results.  The last cycle, 4, has intensified, still trying to take one day at a time, but it does wear you down..  I am now starting each day with an affirmation and a note of grattitude for something in my life.  That helps for a while.  The days the sun shines help.  Being comfortable enough to do this and that, helps.  But I hate the pain killers that I am now having to take in greater numbers, I was on so little for so long.  Makes me wonder if the treatment is working.

  • Hey guys my mum has been also diagnosed with GB CA back in july 2023

    We tried GEM+CIS it made disease stable at start (after 4 cycles),Then had to change regimen

    Currently we're on chemo+immuno(keytruda), i hope this works

    may i know what other immunotherapies people are using?

    Best wishes to everyone and hope we all will definitely beat this soon!

  • Hi,

    I hope you are feeling better? What are you taking for the pain? I find that oromorph helps especially at night which is when I experience most of my pain when lying down. It helps me sleep too. I have now started my second cycle and have been told I will be rescanned after 4th cycle.

    It is awful having to wait so long for the results I’m praying that your treatment will have worked Pray 

    Continue to find the positives in each day xx