Patients’ experiences during treatment with Immunotherapy

Share Patients’ experiences during treatment with Immunotherapy on Facebook Share Patients’ experiences during treatment with Immunotherapy on Twitter Share Patients’ experiences during treatment with Immunotherapy on Linkedin Email Patients’ experiences during treatment with Immunotherapy link

Thank you everybody for your comments. I'm looking forward to hearing from you in the near future in our patient and public engagement group related to this project. If you would like to join this group please send me an email at [email protected] 

Immunotherapy is a cancer treatment that helps your immune system recognise and fight off cancer cells. Immune Checkpoint Inhibitors (ICIs) are a type of Immunotherapy that block proteins that stop the immune system from attacking cancer cells.

Immunotherapy can be used to treat many different types of cancer. This study is looking at patients with gastrointestinal cancer who are being treated with Immune Checkpoint Inhibitors. Gastrointestinal cancers include oesophagus, stomach, liver (HCC), small and large intestine, pancreas, biliary system, colon, rectum and anus cancer.

We would like to hear about your experience of this treatment, and if you developed any side effects. We will use this information to see if we can improve patient care and follow up.

If you are or have been treated with Immune Checkpoint Inhibitors for gastrointestinal cancer or any other type of cancer (or you are a carer of someone in this position) please:

  • Share your story below - tell us about your experience of treatment and the information and support received from healthcare professionals. You can also email this to [email protected]
  • Share your ideas below - where do you go for information, advice and support?
  • Be part of a patient advisory group to support the research and have input into the design of this project. This will be a virtual group that will meet at key points in the project. Email [email protected] to register your interest.


Immunotherapy is a cancer treatment that helps your immune system recognise and fight off cancer cells. Immune Checkpoint Inhibitors (ICIs) are a type of Immunotherapy that block proteins that stop the immune system from attacking cancer cells.

Immunotherapy can be used to treat many different types of cancer. This study is looking at patients with gastrointestinal cancer who are being treated with Immune Checkpoint Inhibitors. Gastrointestinal cancers include oesophagus, stomach, liver (HCC), small and large intestine, pancreas, biliary system, colon, rectum and anus cancer.

We would like to hear about your experience of this treatment, and if you developed any side effects. We will use this information to see if we can improve patient care and follow up.

If you are or have been treated with Immune Checkpoint Inhibitors for gastrointestinal cancer or any other type of cancer (or you are a carer of someone in this position) please:

  • Share your story below - tell us about your experience of treatment and the information and support received from healthcare professionals. You can also email this to [email protected]
  • Share your ideas below - where do you go for information, advice and support?
  • Be part of a patient advisory group to support the research and have input into the design of this project. This will be a virtual group that will meet at key points in the project. Email [email protected] to register your interest.


What is your experience of immunotherapy?

Thank you for sharing your story with us. Please sign up to stay in touch. This way you will get an email from us when we have a new project on the platform.

CLOSED: This discussion has concluded.
  • Share My wife's long history of HPV 16+ head & neck cancer on Facebook Share My wife's long history of HPV 16+ head & neck cancer on Twitter Share My wife's long history of HPV 16+ head & neck cancer on Linkedin Email My wife's long history of HPV 16+ head & neck cancer link

    My wife's long history of HPV 16+ head & neck cancer

    by Nickvan, over 1 year ago

    My wife, Suzanne, was first treated in 2010 at the St. Lukes Cancer Centre, Royal Surrey County Hospital Guildford for SCC HPV16+ right tonsil and cervical lymph nodes, undergoing chemo & RT (60 Gys) followed by radical neck dissection. She recovered well until 2017.

    She had a recurrence of the same type of cancer in 2017 (late diagnosis) this time in the nasopharyngeal space. It was not operable as the tumour was wrapped around the carotid artery. She consented to having a high-risk treatment of more RT (60Gys) & chemo at The Royal Marsden, the treatment area overlapping partially with... Continue reading

    My wife, Suzanne, was first treated in 2010 at the St. Lukes Cancer Centre, Royal Surrey County Hospital Guildford for SCC HPV16+ right tonsil and cervical lymph nodes, undergoing chemo & RT (60 Gys) followed by radical neck dissection. She recovered well until 2017.

    She had a recurrence of the same type of cancer in 2017 (late diagnosis) this time in the nasopharyngeal space. It was not operable as the tumour was wrapped around the carotid artery. She consented to having a high-risk treatment of more RT (60Gys) & chemo at The Royal Marsden, the treatment area overlapping partially with that in 2010. This eliminated the tumour but had a devastating impact on oral tissue, salivary function, swallow and jaw fibrosis which still requires daily management to this day.

    In 2019 she had a recurrence in the left cervical nodes and had a further neck dissection at the Marsden followed by a short course of EBT at the Royal Surrey County Hospital.

    In mid 2020 she was diagnosed with a recurrence in the base of tongue and started immunotherapy treatment (Pembrolizumab) at the RSCH in September 2020. This treatment continued for 2 ½ years and virtually eliminated the tumour. However, towards the end of treatment it resulted in a severe adverse effect that destroyed pancreatic function resulting in exocrine pancreatic insufficiency and type 3C diabetes.

    Unfortunately, a localised spread to the epiglottis was discovered in December 2022 and the RSCH referred her back to the Marsden for participation in a suitable clinical trial. In April 2023 she started on a clinical trial of Cemiplimab (Regeneron) immunotherapy combined with an experimental vaccine (ISA 101b) targeting the specifics of two HPV 16+ tumour protein expressions. This was planned to be a two-year trial with treatment on a three-weekly cycle, along with clinic appointments, blood tests and regular scans. However, the sponsors closed the trial to new entrants but her treatment is continuing on a compassionate basis. In May 2024 her treatment was suspended while while numerous tests for possible ulcerative colitis caused by the immunotherapy were undertaken at RSCH. Ultimately U/C and other inflammatory side effects were ruled out and treatment re-commenced in August 2024.

  • Share Immunotherapy for Stage 4 Head and Neck Cancer on Facebook Share Immunotherapy for Stage 4 Head and Neck Cancer on Twitter Share Immunotherapy for Stage 4 Head and Neck Cancer on Linkedin Email Immunotherapy for Stage 4 Head and Neck Cancer link

    Immunotherapy for Stage 4 Head and Neck Cancer

    by AnsonMackay, over 1 year ago

    After chemo-radiation treatment for HPV-related head and neck cancer in 2020, the cancer had unfortunately spread, and in 2021 I was diagnosed with Stage 4 cancer, with 6 tumours across both lungs.

    I had biomarkers for PDL1(?) checked out, and they showed that I would be a suitable patient for immunotherapy, specifically Pembrolizumab. I was given an infusion in a cancer ward every 6 weeks, and I had CT scans every 3 months.

    The Pembro worked quickly to reduce the size of the tumours and then over the next 2-year period they gradually shrunk to a small size.

    As Pembro... Continue reading

    After chemo-radiation treatment for HPV-related head and neck cancer in 2020, the cancer had unfortunately spread, and in 2021 I was diagnosed with Stage 4 cancer, with 6 tumours across both lungs.

    I had biomarkers for PDL1(?) checked out, and they showed that I would be a suitable patient for immunotherapy, specifically Pembrolizumab. I was given an infusion in a cancer ward every 6 weeks, and I had CT scans every 3 months.

    The Pembro worked quickly to reduce the size of the tumours and then over the next 2-year period they gradually shrunk to a small size.

    As Pembro was only licensed for 2 years, I came off treatment in 2023 and am now scanned every 3 months to check that the cancer has not spread further.

    So my experience of immunotherapy has been really, really good. I had few, if any, side effects (apart from fatigue for a day or so after my infusion). This meant that I could continue with my passion of running ultra-marathons.

    But I know that I was very lucky (i) in being able to have immunotherapy treatment, (ii) that it does not cause me any major side effects, and (iii) the treatment worked to show that by the end of two years scans revealed I have had a complete radiological response.

    I wrote up about my experiences with immunotherapy here, if any one would like more information

    https://ansmackay.wixsite.com/uclgeography/blog

    My main worry now is if, or when, the tumours do regrow, or new ones appear, how will I be treated? No one seems sure of my eligibility to go back onto Pembro, so that is an uncertainty that does worry me.

  • Share Nataliya09 on Facebook Share Nataliya09 on Twitter Share Nataliya09 on Linkedin Email Nataliya09 link

    Nataliya09

    by Nataliya09, over 1 year ago

    I've had 12 rounds of immunotherapy - started in November 2023, after 10 rounds of chemotherapy. I have been explained all side effects to expect, and given a brochure with information about the drug used in the treatment. I'm having treatment once every three weeks. So far, I'm tolerating the immunotherapy much better than chemo, with practically no side effects (I have neuropathy but it seems to be a chemo side effect). The immunotherapy seems to work well for me at the moment.

    I've had 12 rounds of immunotherapy - started in November 2023, after 10 rounds of chemotherapy. I have been explained all side effects to expect, and given a brochure with information about the drug used in the treatment. I'm having treatment once every three weeks. So far, I'm tolerating the immunotherapy much better than chemo, with practically no side effects (I have neuropathy but it seems to be a chemo side effect). The immunotherapy seems to work well for me at the moment.