Squamous Cell Carcinoma (Oesophagus)

Oesophageal squamous cell carcinoma:

Has anyone had experience with nivolumab?

Hi everyone,

I'm writing this because I'm struggling to come to terms with everything that has happened to my wife,   I'm hoping to hear from people who have been through something similar.

My wife was diagnosed with squamous cell carcinoma of the oesophagus in October last year. Earlier in the year, she had been to the doctors because she was struggling to swallow food and losing weight. She was prescribed omeprazole and Gaviscon for what was thought to be heartburn and indigestion. Unfortunately, her symptoms got worse, and after an online consultation, she was taken to hospital, where she was diagnosed with Stage 3 cancer.

She underwent chemotherapy and radiotherapy, but sadly, these treatments did not help and things became worse. She was then offered palliative chemotherapy, but this was eventually stopped because it wasn't working.

The doctors subsequently offered her immunotherapy with nivolumab. Initially, my wife agreed to try it, but after we discussed the possible side effects and how difficult she had already found chemotherapy and radiotherapy, she changed her mind and decided she did not want to go ahead with it.

I fully respect her decision, and I don't want her to suffer any more than she already has. However, I can't help wondering whether immunotherapy might have helped her or given us more time together.

I know everyone's cancer and response to treatment are different, but I would really appreciate hearing from anyone with oesophageal squamous cell carcinoma who has received nivolumab.

  • Did it help to control your cancer?
  • What side effects did you experience, and how difficult were they to manage?
  • Were you able to maintain a reasonable quality of life during treatment?
  • Has anyone decided against immunotherapy, and how did you feel about that decision afterwards?

My wife is receiving palliative care, and all I want is for her to be as comfortable as possible and to have the best quality of life we can manage.

We've been married for nearly 23 years, and facing the possibility of losing her is something I am struggling to process. I want to support her wishes, but I also find myself questioning whether we made the right decision.

I'm not looking for false hope or medical advice from strangers. I would simply be grateful to hear honest experiences from people who understand what this journey is like.

Thank you for taking the time to read this, and I wish everyone here strength and comfort in whatever they are facing.

Parents
  • Hello Dulon

    From my experience with immunotherapy Cemiplimab for cutaneous squamous cell cancer which is metastatic stage 4 in bones spine and lung. It is far better tolerated than chemotherapy and far less brutal than radiotherapy. The list of serious symptoms occur rarely and if the immune system runs out of control it can be calmed down with steroids. Patients are closely monitored with frequent blood tests, scans and contact with an oncology nurse and a 24 hour contact number. The treatment for me is palliative there are no further options. I am at the end of 2 years treatment which has improved my life from being very poorly with a short lifespan to living healthily some of the tumours have shrunk the rest have been stable. Im told that there is an enduring effect after treatment stops my body having been trained to attack the cancer cells. My side effects have been fatigue and an itchy skin rash both of which are manageable. While Nivolumab is a different drug there are around 40 different immunotherapy drugs in this class which appear to have similar side effects. While I understand your wife has been through a lot and may wish no further treatment. I would certainly reconsider giving it a try even for just a few cycles, she can always stop treatment at any time, she has nothing to lose but possibly a lot to gain. I too was reluctant to start treatment but having read others experiences on this forum and being urged to at least give it a try, I am glad I did now.

    Ed

Reply
  • Hello Dulon

    From my experience with immunotherapy Cemiplimab for cutaneous squamous cell cancer which is metastatic stage 4 in bones spine and lung. It is far better tolerated than chemotherapy and far less brutal than radiotherapy. The list of serious symptoms occur rarely and if the immune system runs out of control it can be calmed down with steroids. Patients are closely monitored with frequent blood tests, scans and contact with an oncology nurse and a 24 hour contact number. The treatment for me is palliative there are no further options. I am at the end of 2 years treatment which has improved my life from being very poorly with a short lifespan to living healthily some of the tumours have shrunk the rest have been stable. Im told that there is an enduring effect after treatment stops my body having been trained to attack the cancer cells. My side effects have been fatigue and an itchy skin rash both of which are manageable. While Nivolumab is a different drug there are around 40 different immunotherapy drugs in this class which appear to have similar side effects. While I understand your wife has been through a lot and may wish no further treatment. I would certainly reconsider giving it a try even for just a few cycles, she can always stop treatment at any time, she has nothing to lose but possibly a lot to gain. I too was reluctant to start treatment but having read others experiences on this forum and being urged to at least give it a try, I am glad I did now.

    Ed

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