Advice on seeking additional treatment (e.g. Durvalumab) other than Gem/Cis chemo

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Hi there - my mum (age 60) very sadly got diagnosed with terminal cholangiocarcinoma just before Christmas and is due to start on Gem/Cis chemo on the 12 January. The news is shocking as she's led such a healthy life and we are determined to seek further available treatment for the very best chances of extending life. 

We've seen the studies showing the successful trials using Durvalumab used alongside the Gem-Cis chemo for treating cholangiocarcinoma, but those trials are no longer recruiting new patients and the drug is only expected to be NICE approved for use in the NHS in September 2023 and we will need to access this before then.

I wondered if anyone was able to help with my below queries/had any experiences to share?

- Has anyone been able to access Durvalumab alongside the chemo for treating cholangiocarcinoma?

- Even if we have to pay for it, we are wondering how we go about accessing the drug in the South West/Devon area?

- We are desperate to do what we can and seek further advice on treatment, so any advice or experiences anyone can share would be hugely appreciated.

Thanks so much

Ellie 

  •  

    Hi Ellie and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    I don't have any experience with durvalumab but I noticed that your post hadn't had any replies yet. I did a search in the group for previous posts which mention this drug but drew a blank I'm afraid. Of course this doesn't necessarily mean that no one here has used it, just not posted about it.

    I don't know how you'd go about accessing durvalumab privately but your mum's consultant or cancer nurse specialist (CNS), sometimes referred to as a keyworker, should be able to point you in the right direction.

    If you are wanting to get a second opinion on your mum's proposed treatment, clicking on the link I've created will take you to Macmillan's page on how to go about doing this, along with the pros and cons.

    It would be great if you could pop something about your mum's diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

    x

    Wishing you and your mum all the best.

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Hello Ellie - my wife (also aged 60) has just been diagnosed with the same. We are just starting on this journey and about to meet our oncologist for the first time next Monday. We are expecting the worst in terms of a prognosis. I don't know anything yet about the trials you mention or the new drug, but we too live in South Devon and are being treated at Torbay. I thought it might be helpful to stay in contact. My wife is a very spiritual woman who strongly believes in the power of the body to heal itself, given the right conditions and support. She has begun a very rigid diet cutting out all sugar, fat, gluten etc. It is very challenging and she has continued to lose weight, but we are taking advice from a naturopath and looking very much towards a natural healing approach. Unless the evidence is very persuasive, I doubt she will be accepting chemotherapy. I hope we can keep in touch. Simon

  • I’m very new to this group and am reading every thing I can with regards to treatment for bile duct cancer. My husband has been diagnosed and is about to start palliative chemo of Gemcis. It it isn’t too painful can you let me know whether you wife went down that route? Thank you for reading this. 

  • My husband is embarking on this route and I am beyond desperate.  Did you manage to get any Durvalumab? If it’s too painful to respond I totally understand. 

  • When my husband was finally given the diagnosis of bile duct cancer, he had already lost too much body mass and was told chemotherapy wouldn't help him. He had a very aggressive form of the cancer and only survived less than 4 weeks from confirmation of bile duct cancer. Good luck with the treatment 

  • I am so sorry and sad for you. 

  • Hi, I am 58yrs old and have recently been diagnosed with cholangiocarcinoma. I didn’t have any symptoms until I suddenly became jaundiced. I have the intrahepatic type and had an ERCP which failed to fit a stent as it was too challenging due to the tumour and then had a PTC which fitted a drain and then eventually a metal stent was inserted. The tumour started in the bile duct but has gone into the liver and there are suspicious modules in my lungs. After weeks in hospital and two biopsies (the first failed to get the info required) I finally got the diagnosis 1st August 2023. It is obviously devastating and I was given 6-12months. I have started on palliative chemo GemCarbo, as I already wear hearing aids so my Oncologist said the Cisplatin can cause more hearing loss. I have had two sessions so far and the third week I miss and then it starts again and this 3 week cycle I do 4 times and then have a scan to see if the chemo has shrunk the tumour or stopped it growing. I have felt fine so far but have only done my first cycle.  I want to give it a try as I want to spend as much time as I can with my husband and daughters. I asked my Oncologist about Durvalumab and apparently it’s not NHS approved as yet for Cholangiocarcinoma but I am hoping it is soon.

  • Oh my word I am so sorry to hear your news. My husbands diagnosis was originally thought to be kidneys, then gallbladder and it wasn’t til about a month later the medicos tumbled to the fact that it’s this wretched BDC. 
    Rightly or wrongly my husband has elected for 3 bouts (I think) of chemo. First session starts this Friday. He’s going to get GemCis and I hope he doesn’t feel too awful. So very encouraged to hear you didn’t feel to crummy after your first bout. 
    We are hoping he has a mutant gene, in which case he won’t have chemo again,  but a different drug which isn’t so brutal. But sadly it is not going to extend his life. 
    Once again I’m saddened by your news. How is you husband coping and do you have any outside help? I hoping to get some but I don’t know from where. …. 
    Ping me anytime and if I can I will always respond. 
    Best wishes. 

  • Hi ARY21, Thank you for replying, it is nice to be in touch with someone going through the same. I hope your husband’s chemo goes well this week. I am still learning and have only just learnt about molecular profiling so will ask my Oncologist as she did mention she was going to check with the hospital about FGFR and NTRK and I didn’t know what she meant at the time. I know they did a lot of tests on the biopsy.
    I tend to get really sad at bedtime, it just seems to hit me then and when I get upset it upsets my husband. I have asked the MacMillan Unit where I go for the chemo if there is any emotional support and the nurse said she would refer me to the psychologist,I think this may help as it is so difficult to accept the timescales given, especially when I feel the best I have in 3 months. I am hoping that following the chemo will give me more time and that a trial may come up.
    I think my husband could do with some counselling too, he is being so strong for me and our two daughters (17/15yrs) at the moment but he is finding it so difficult to accept too. 

  • It’s utterly miserable and I’m pleased to hear that you are feeling ok at the moment.  Tbh I don’t know how you and my husband can carry on as ‘normal’.
    I do try and be strong etc for my husband as your husband is being for you. But there are many things in the pipeline I am beyond dreading and I’m hoping I will be able to cope. Sadly we don’t have any children - only a bouncy labrador, whom adores my husband and will be lost in a year or so times. 
    Very much hoping they find out whether you have the gene. 
    Keep in touch. I’m here!