new diagnosis

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My mum has just been diagnosed with stage 4b and she cant have surgery but they do want to start chemo - she is terrified as I am and don't  know how to support her  - she had a stent fitted last week and she was so ill after it, she got e coli whilst in hospital and shes home now so I am scared about side effects  of the chemo

  • So sorry to hear about your Mum it is distressing for all of your family. So my heart goes out to you.  

    I am in a very similar position to your Mum and face choices when it comes to treatment.

    Conventional  chemotherapy is notoriously ineffective at prolonging survival in stage 4 oesophageal cancer. However, there are benefits when it comes to symptom control. The questions I have for my Consultant will be all about Quality of Life vs Quantity of Life because conventional chemotherapy has such unpleasant side effects. I will have to be very clear that there is a good chance that any benefits will outweigh the side effects before I consent to chemotherapy. 

    You do not say whether or not your mum is eligible for immunotherapy or targetted (personalised) therapy in which case there is often a much better outlook.

    Best wishes. 

  • Hi and sorry to hear about your mum’s diagnosis. What age is your mum and have they told you which chemotherapy regime she will be having?  I had FLOT and the side effects, while unpleasant, were tolerable with the right medications. People respond to it in different ways and experience their own symptoms from the plethora of possible ones. For me it was mainly constipation/diarrhoea (yes, both!!), peripheral neuropathy and crushing fatigue. The best way you can support her is to make sure she has the medications that she needs and takes th when required, accompany to consultations to ask questions and take notes and help her to find foods that she is able to eat to keep her strength up for whatever treatment path she follows. Hope this is of some help 

    Cool Blue

  • FLOT is used on a curative pathway and the evidence of benefit is very clear. 
    I too have received definitive chemotherapy where side effects were well managed. The scenario and choices for those of us at stage 4 and facing end of life is very different. 

  • Thank you so much for your response, and sharing your experience , it helps a lot . I would rather she didnt have chemo and stayed as well as she can for as long as she can. I know its not my choice, it has to be her decision .  I think they have mentioned FLOT - this has all happened so fast and no its going at about 100 miles an hour with so much information being given . Mum is 84 and usually quite fit and mobile but we think this is a missed diagnosis as for the last 6 months she has been complaining of being able to eat less and less and has lost a lot of weight - she had an ednsocopy in January that was clear then all of a sudden she now has stage 4b so lots of questions etc 

  • Hi mum only had bloods done last Friday so we will find out when we see the consultant next week if she's good for immunotherapy as well as chemo , by targeted do you mean radiotherapy? if so then no she can't have that so she will have to rely on chemo and or immuno and yes quality of life vs what benefits treatment will bring is the big issue , , thank you for your response , very helpful just being able to reach out x

  • I am holding off starting chemotherapy for as long as I can. Working with my Consultant to try and find the window where my disease burden does not preclude me from having any treatment that may prolong my survival. By that I mean there’s a risk I might become too poorly to tolerate chemo anyway.

    I was given the option to start chemotherapy about a month ago but opted to continue with surveillance (every 2 months). I feel fine now but would be feeling poorly now had I opted for the chemo. 

    Targeted therapy is not radiotherapy. It’s a class of drugs that are effective on tumours that exhibit certain biomarkers. HER-2 is a target in oesophageal cancer but not everyone has this. I don’t.  There may also be clinical trials investigating other biomarkers.

    kind regards