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Living with stage 4 oesophageal cancer

Thetelfordwolf62
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Just over 4 years ago,I was diagnosed with oesophageal cancer,during the start of the covid pandemic,I underwent 4 rounds of FLOT chemotherapy,then a 2 month wait for Ivor Lewis surgery,I spent 10 days in ICU.Returned home while I gained strength before another 4 rounds of FLOT chemo .

I was told if I get to 2 years,I’ve probably cracked it ..then 2 years 4 months later I lost my voice,was sent for a CT scan after being told it’s probably a viral infection,however results revealed it has returned to the same area and now inoperable,I have since had 6 rounds of CAPOX chemotherapy which was incredibly hard going ..and after another CT scan revealed had spread slightly to lymph nodes.

I was then given 10 rounds of radiotherapy,and currently awaiting results of what situation I am in now ..I feel like I’m running out of options,still hardly any voice 18 months later and now a continuous dry cough

is anyone else out there in similar circumstances,Regards Marc aged 63 

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     Hi  , firstly, I am terribly sorry to hear you are going through this experience. Although everyone is unique and different, allow me to share my story with you below. You can also read my initial posts from when I was first diagnosed in May 2023. (Also thanks to  for the tag).

    Here is my story that I have recently posted to another online forum:

    At the age of 32, in May 2023, I received the devastating diagnosis of stage 4 adenocarcinoma after a few weeks of experiencing difficulties with swallowing. An endoscopy revealed a substantial 7cm mass, and subsequent CT and PET scans revealed metastasis to multiple lymph nodes, resulting in an unfortunate incurable disease.
    In June 2023, I commenced six cycles of palliative chemotherapy (comprising cisplatin and capecitabine) alongside herceptin due to my HER2 positive status. Midway through treatment, a scan in August 2023 indicated a significant 50% reduction in tumour size across all affected areas.
    Subsequently, I discovered that I was PDL1 positive, making me eligible for keytruda immunotherapy. However, obtaining both herceptin and keytruda concurrently through the NHS was not funded. Fortunately, with the assistance of my oncologist and after a successful appeal, funding was eventually granted through my private health insurance provided by my employer.
    Upon completion of chemotherapy in November 2023, subsequent scans indicated regression of lymph nodes to normal size and a significant reduction in the primary tumour, described as 'unmeasurable / mild thickening'. Chemotherapy was then stopped, and treatment continued with herceptin and keytruda.
    Again, a recent CT scan in January 2024 reported stable disease, prompting further discussions with my oncologist. Requesting a deeper conversation for additional options.
    To my surprise, my oncologist recommended a PET scan to explore potential avenues for curative intervention—a term I never imagined hearing. I approach this new development with cautious optimism, acknowledging the importance of advocating for oneself throughout this journey. This PET scan will look at the previous disease sites and is due to take place in March.
    I felt compelled to share my story here to offer a ray of hope.
    Sometimes, seeking second opinions and being proactive in discussions with healthcare providers can uncover treatment options that may otherwise remain unknown. Though the journey may be challenging, there is always hope to hold onto.
    I'm open to questions and discussions and would love to help other patients and caregivers in any way.
Reply
  • Offline

     Hi  , firstly, I am terribly sorry to hear you are going through this experience. Although everyone is unique and different, allow me to share my story with you below. You can also read my initial posts from when I was first diagnosed in May 2023. (Also thanks to  for the tag).

    Here is my story that I have recently posted to another online forum:

    At the age of 32, in May 2023, I received the devastating diagnosis of stage 4 adenocarcinoma after a few weeks of experiencing difficulties with swallowing. An endoscopy revealed a substantial 7cm mass, and subsequent CT and PET scans revealed metastasis to multiple lymph nodes, resulting in an unfortunate incurable disease.
    In June 2023, I commenced six cycles of palliative chemotherapy (comprising cisplatin and capecitabine) alongside herceptin due to my HER2 positive status. Midway through treatment, a scan in August 2023 indicated a significant 50% reduction in tumour size across all affected areas.
    Subsequently, I discovered that I was PDL1 positive, making me eligible for keytruda immunotherapy. However, obtaining both herceptin and keytruda concurrently through the NHS was not funded. Fortunately, with the assistance of my oncologist and after a successful appeal, funding was eventually granted through my private health insurance provided by my employer.
    Upon completion of chemotherapy in November 2023, subsequent scans indicated regression of lymph nodes to normal size and a significant reduction in the primary tumour, described as 'unmeasurable / mild thickening'. Chemotherapy was then stopped, and treatment continued with herceptin and keytruda.
    Again, a recent CT scan in January 2024 reported stable disease, prompting further discussions with my oncologist. Requesting a deeper conversation for additional options.
    To my surprise, my oncologist recommended a PET scan to explore potential avenues for curative intervention—a term I never imagined hearing. I approach this new development with cautious optimism, acknowledging the importance of advocating for oneself throughout this journey. This PET scan will look at the previous disease sites and is due to take place in March.
    I felt compelled to share my story here to offer a ray of hope.
    Sometimes, seeking second opinions and being proactive in discussions with healthcare providers can uncover treatment options that may otherwise remain unknown. Though the journey may be challenging, there is always hope to hold onto.
    I'm open to questions and discussions and would love to help other patients and caregivers in any way.
Children
  • Offline in reply to Greencarpet

    Thanks for your reply,I was busy yesterday what with kids and grandkids,and my head is all over the place at present,but that’s good to hear.I don’t however have health insurance,but my question tomorrow to oncology is immunotherapy an option,as apart from chemo I can’t see any more options.

    This  waiting game is the worst,are they going to say it’s chemo or,you have so long,without it,I am a positive person and remain happy and active,but I also read life expectancy is 5 years from diagnosis and this is the start of year 5,time will tell,and tomorrow may give me further hope,

    I wish you good health,keep in touch and I will let you know the outcome kind regards, Marc

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