Patient and carer experiences with the medication Trifluridine-Tipiracil (Lonsurf) used to treat advanced stomach cancer and cancer of the oesophageal (gullet)/gastric (stomach) junction

Trifluridine–tipiracil (Lonsurf) is a cancer medicine (chemotherapy) for the treatment of adult patients with stomach cancer and cancer of the junction between the stomach and gullet. This medication is proposed to be used for people who have been previously treated with at least two whole body treatments for advanced cancer.

This medicine (chemotherapy) is proposed for treatment when most people would only be given best supportive care for their cancer as a third treatment. It is very unusual to receive more than two chemotherapy treatments because of lack of evidence of benefit to patients.

The Scottish Medicines Consortium (SMC) is committed to working in partnership with patient groups to capture patient and carer experiences and use these to inform decision-making with regards to approval of medicines for use in Scotland. They are requesting the opinion of patients and carers of patients with these cancers about the use of this treatment. If you are living in the UK and have tried this treatment or are living with best supportive care for cancer or you are a carer for someone with these advanced cancers we would like to hear your views on living with this diagnosis and what the benefits and drawbacks are of this treatment.

The deadline for completing this survey is 22nd February 2021.

Question Title

* 1. Have you, or someone you care for, been given a diagnosis of stomach (gastric) cancer or cancer of the junction between the stomach and gullet (oesophagus)? (If the answer is no, please exit the survey at this point)

Yes, I am a patient.

Yes, I am a carer.

Comment

Question Title

* 2. Please tick the relevant areas of your life where a diagnosis of stomach (gastric) cancer or cancer of the junction between the stomach (gastric) and gullet (oesophagus) has worsened the quality of your life?

Social life (Examples: going out, spending time on hobbies, catching up with friends)

Eating (time to finish meals/ability to eat/taste changes)

Diet (changes to the texture of food tolerated/restrictions to the amount of food eaten)

Work (sick leave, alterations to job role/redundancy/pip (personal independence payment) applications)

Financial (loss of earnings/travel costs to appointments/prescription costs)

Mood (coping with symptoms/quality of life/fear about the future/anxiety/uncertainty/anger)

Physical appearance (weight changes/hair loss/other changes to appearance)

Tiredness (fatigue, sleep problems)

Pain

bowel symptoms - diarrhoea, constipation, abdominal pain, bloating (restricting social life/embarrassment)

Other (please specify)

None of the above

Question Title

* 3. Have you or someone you care for been prescribed trifluridine-tipiracil (Lonsurf)? (If the answer is yes go to question 4

Yes

No - I was not aware of this treatment.

No - I found this treatment was difficult to get from my doctor.

No - my doctor advised against this treatment.

Question Title

* 4. Tell us your experience with the medicine trifluridine-tipiracil (Lonsurf)

I have been satisfied with the medication as treatment.

I have had side effects from this treatment but would still recommend it to be used (please give more detail in the comments section)

I have had side effects from this treatment which I found were intolerable (please give more detail in the comments section)

I found this medication improved my quality of life - see points in question 2 (please give more detail in the comments section)

Other (please specify) or provide more detail about your answers to the above

Question Title

* 5. Often medicines used in cancer treatment can cause bowel side effects such as constipation (examples are morphine, codeine, tramadol, buprenorphine, tapentadol and fentanyl.) If you have bowel symptoms are you able to attribute your symptoms directly to taking the medicine Trifluridine-Tipiracil (Lonsurf)?

Yes

Comments

Thank you for completing this survey as it will help the committee to decide on future treatment that may benefit people with stomach cancer and cancer of the stomach oespohageal (gullet) junction. Please contact Guts UK Charity if you have any feedback or comments about the survey on 01484 484123 or info@gutscharity.org.uk. Many symptoms of cancer and side effects of treatment can be managed, you can discuss this with your care team (cancer doctor, specialist cancer nurse or palliative care team) or you can find out more from Macmillan 0808 808 0000 https://www.macmillan.org.uk/ who also provide support for wellbeing.