oesophageal cancer & chemo

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Hi everyone,

A quick question from me- My dad has Oesophageal cancer - diagnosed 4 months ago and told he has months. He has done 4 rounds of chemo and 2 rounds of immunotheraphy. He has not had any severe symptoms and seems very strong/ has not noticably got any worse since diagnosis so we were hoping for the best despite the initial diagnosis. 

The scan he had last week shows no change in the cancer growth- some areas seem a tiny bit smaller and some areas in the lympth nodes are slightly bigger but only around 2mm total.

Does anyone have any knowledge in terms of if treatment hasn't shrunk it at all after 4 rounds - does this mean it likely never will or has it sometimes taken more time than that but has then started to shrink?

Thank you!

  • First of all, I'm really sorry you're going through this. I'm in the same boat. My mum (56) was diagnosed 4 months ago too and we got the news this week that there's sadly no curative treatment for her. I'm absolutely devastated.

    She had 4 rounds of chemo (FOLFOX) that unfortunately didn't work, in fact the tumour grew, so we're dealing with a resistant and aggressive tumour. In this time, the tumour has grown stuck to her lung and because of this, surgery isn't an option. They also won't give her radiotherapy because of the risk of damaging the lung and leaving her with life threatening injuries (almost funny since her life is already threatened.)

    Her options now are palliative and the purpose is to manage the cancer to buy her some extra time, but it will never go away. She needs to choose between a different chemo drug or immunotherapy. The first lot of chemo floored her - she was extremely unwell from it, but her oncologist says this next drug is different and people tend to react better, so I'm pleased to hear your dad didn't have severe symptoms. I hope she won't too so she can enjoy the rest of her time feeling somewhat okay.

    It sounds positive that your dad's cancer has had a bit of shrinkage. My mum's oncologist said her next lot of chemo is unlikely to shrink the tumour to the point that she will become eligible for radiotherapy, but hey, miracles happen and that's what I'm trying to focus on.

  • Hi Beth sorry to hear your dad has had no improvement on the size of the tumour. I have the same and have also had 4 rounds of chemo with a scan on Monday. There are so many different types of cancer and many different chemo drugs too . Some work some don't.Im hoping mine has shrunk but they have said they can operate in December.

    I'm sure they will look at all options for your dad and I know it's difficult but never give up and try to stay positive

    Wish you all the best

    Dean

  • Hi Ayla sorry to hear your mum is on palliative care. I'm sure they will try absolutely everything to help her.

    I have Oesophagal cancer and have had 4 rounds of chemo. I have a scan on Monday which will see if it's made any difference. They have scheduled an op for December to remove tumour but it is all very worrying and of course you wonder whether it will work. I'm apprehensive as it's a 6 to 8 hr op with quite a long recovery time. I have full trust in them but don't know what to expect.

    Wish you all the best for your mum

    Dean

  • Hi Beth111

    My husband when diagnosed was advised that he had 4 months without treatment, and if lucky 1 year with, the initial specialist advised him to go home and put his house in order, and that is what we started doing..  our focus was so on the possible negative outcome that for a short time we stopped living the best life each and every day.....  The main Oncologist told him that they would do everything they could to make him comfortable, but he was now a terminal patient on palliative care... that word, Palliative was very scary, possibly because we saw it as being the treatment given over the final months of life... in our case this has not been what Palliative care has been, it has been three and a half years of initially learning to understand how to live with Dal's condition and then living the very best life we can...  he is now heading in to his 88th treatment, he has moved from FLOT on to Immuno/targeted therapy  and it is definitely giving him longer life expectancy than we were originally advised.. 

    His throat tumour is stable, it will never get smaller, his liver and lungs have reacted really well with limited mets found now.

    I am telling you all this because it is important that you and your Dad focus on the positives of what the treatment can give, rather than the negatives of a prognosis that may not be correct. As long as the tumour does not get any bigger, the treatment is working and that is what is important right now ..  

    I wish you Dad every success with this 

    Lowe' 

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Hi Lowe,

    Thank you for your response - i found it really helpful!

    Dal sounds like an absolute trooper as is, i believe, my dad and I know that he will keep fighting and positive for as long as he possible can.

    As a loved one, I find the prognosis element really difficult. Finding out initial prognosis I wanted to move back home to be with him and take long leave from my job, do trips together and any bucket list things he wants to do but at the same time it's such a difficult disease we hopefully will have years with him in which case I can't quit my job and move home (for ref I am 25 and live 4 hours away from my parents) and I also don't want to treat him like he's got months left (i.e. saying we should do bucket list type activities together) because that's not a nice feeling for him.

    I totally understand that he doesn't want to know any timeline but i'm finding it hard because I want to spend all my time with him and enjoying every moment especially if we don't have long left together but I also need to be living my 20s as he would want me to- especially if the prognosis is wrong and he has years and years with us which is what we are praying.

    If you have any advice on this it would be really appreciated

  • Hi Beth111

    I think the best advice I can give you is this 

    1. Both you and your Dad are important, ensure that whatever decisions you make are not through fear of what might happen next, remember, none of us are promised tomorrow, even if we are fit and healthy, our time will come and although we know this, we do not generally live in fear of it. 

    2. Making a bucket list shouldn't only be for people with a terminal illness, although it is often the case that this is when they are thought of, so make a list with your Dad anyway, of things that you would like to make time to complete together, as well as things you would just like to do, with, or without each other. (you can honour him further by carrying that on for many many years to come)

    3. Live your best lives, make plans, book holidays, give an extra day a month to your Dad which you would not necessarily of done had he not become ill. Because sometimes life becomes too busy, and overtakes us and days roll into months.  

    Live....  Live and Live... because life is too short, no matter how long we have left. Show those important to you how important they are by sharing time with them whenever you can, but also give yourself time for you.. 

    Dal and I have just come back from holiday, as scary an experience it was to go on an adventure that took over 10 hours flight time to get to, not knowing how he would react to the food, to the environment, we cleared it with his oncologist, she believed he is well enough in himself and we bit the bullet.  Fear can take so much positive out of our life, look to the future, and give your Dad what time you can, whilst you also live your life as he and you know you are entitled to. 

    I rambled on a bit, sorry, but I hope this helps. 

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Hi Lowedal that is such good advice for Beth. I have Oesophagal cancer, have done 4 rounds of chemo and now waiting for results of scan to see what it's done. They can operate if needed in December.

    I am so positive but at the same time I'm a bit apprehensive on what will happen next. Cancer is so difficult for everyone to deal with and it's hard to say the right things to each other sometimes.

    I'm hoping it will all be ok for me but if things do take a turn for the worst I will make the most of every day and make it count.

    I love my family and they love me so I'm fighting all the way

    Best of luck to you too

    Dean

  • Hi Dean

    I only got back home yesterday, and I have read a few of your posts today, and it is great the way you have taken your experience and fed it back to others who are newly experiencing their own diagnosis.. Your posts are positive and comforting, thank you for reaching out to others here. 

    Apprehension is what keeps us on our toes, keeping as positive as you can and sharing your thoughts and feelings with your loved ones, so they know where your head is, are really important, sometimes people may choose to lock down within themselves, and although that may work for them, it is really tough for people on the outside, everyone in your family is in this with you..  

    I hope that your treatment has been successful, that the op is given if needed and that after a period of recovery, you manage to find your new self and make peace with who that is, if you can do that, you will live your best life.. 

    Best of Luck to you also Dean

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Hi Lowedal very kind of you to say that. I have got a lot of useful advice myself posting on here. I always like to help other people if I can and in return many have helped me understand what I'm up against.

    All my family, friends and neighbours have been so supportive and that really gives me strength to fight this. Should get results of scan today so will know what is next for me

    Thanks again

    Dean

  • I am so impressed with the quality and compassion in the advice and support which is offered and accepted on this forum. As someone who is relatively at the beginning of what I know will be a long and arduous journey, I have found a lot of useful information here to let me know what to expect and tips on how best to deal with it. I am very lucky to have a wonderful wife and supportive family to help get me through but being able to read the experiences of those who have travelled this path before me is extremely helpful too. After many tests, scans, etc., I have my first oncology appointment coming up this week and, although I realise that many of the potential side effects can be quite unpleasant, I am keen to finally get started on some treatment. Wishing you all well at whatever stage of your treatment you find yourselves…