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Help Shape Future Research
We are developing a PhD research study exploring patients' experiences of treatment with immunotherapy (immune checkpoint inhibitors) for cancer.
Immunotherapy helps the body's immune system recognise and fight cancer cells and is increasingly used to treat a range of cancers, including liver, pancreatic, and biliary cancers.
We would like to hear from:
People who are currently receiving or have previously received immunotherapy for any type of cancer
Family members or carers of someone who has received immunotherapy
Your experiences and insights will help us design a research study that focuses on the issues that matter most to patients and families.
What is involved?
Taking part in one 90-minute online workshop
Sharing your experiences and views
Helping to shape future research
You only need to attend one of the workshop sessions listed below.
Thank you voucher
A £20 voucher will be provided in recognition of your time and contribution.
Workshop dates
Wednesday 15 July, 6:00–7:30 pm
Monday 27 July, 12:30–2:00 pm
Friday 31 July, 10:00–11:30 am
Interested?
Please, email [email protected] to register your interest and let us know which session you would like to attend.
Thank your time and interest in this research.
Laura
Help Shape Future Research
We are developing a PhD research study exploring patients' experiences of treatment with immunotherapy (immune checkpoint inhibitors) for cancer.
Immunotherapy helps the body's immune system recognise and fight cancer cells and is increasingly used to treat a range of cancers, including liver, pancreatic, and biliary cancers.
We would like to hear from:
People who are currently receiving or have previously received immunotherapy for any type of cancer
Family members or carers of someone who has received immunotherapy
Your experiences and insights will help us design a research study that focuses on the issues that matter most to patients and families.
What is involved?
Taking part in one 90-minute online workshop
Sharing your experiences and views
Helping to shape future research
You only need to attend one of the workshop sessions listed below.
Thank you voucher
A £20 voucher will be provided in recognition of your time and contribution.
Workshop dates
Wednesday 15 July, 6:00–7:30 pm
Monday 27 July, 12:30–2:00 pm
Friday 31 July, 10:00–11:30 am
Interested?
Please, email [email protected] to register your interest and let us know which session you would like to attend.
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.
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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.
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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.
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
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.
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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.
