PATIENT EXPERIENCE OF ALECTINIB HYDROCHLORIDE (ALECENSA)/ ALK POSITIVE NON SMALL CELL LUNG CANCER

[RoyCastleHelpline]

Alectinib hydrochloride (Alecensa) will shortly be assessed by the Scottish Medicines Consortium (SMC) for use in NHS Scotland

The indication this medicine will be assessed under is: “Monotherapy as adjuvant treatment for adult patients with Stage IB (tumours ≥ 4cm) to IIIA (7th edition of the UICC/AJCC-staging system) anaplastic lymphoma kinase (ALK)-positive non-small cell lung cancer (NSCLC) following complete tumour resection.”

We have been invited to provide a Patient Group Submission for the indications of this medicine, and are therefore trying to gather some patients experience quotes in support for this proposed treatment; you do not have to live in Scotland to comment and it would be extremely helpful to know the following:

What is your experience of living with ALK positive lung cancer and how does this affect your quality of life.

What was your experience of Alectinib? Did you have any side effects and were they managed well.

How did being on Alectinib affect your quality of life?

If you have had treatment before or after surgery, what was your experience?

Would you welcome the opportunity to have additional treatment after surgery?

If you are happy to comment on any of the questions, please get in touch, no personal details are needed but discussing it with you will help us put together the document on behalf of patients.

Please either comment below, private message or email [e-mail], alternatively, you can phone the Roy Castle Ask the Nurse service on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

All comments are welcome, so please do get in touch.

Thank you in advance.

The Roy Castle Lung Cancer Foundation

[Bow-19]

Have shared this with some people in the UK who I know who have experience of alectinib at stage 4 if that’s what you are looking for? I can also share it outside of the U.K. if that’s useful?

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to Bow-19]

Hi Bow-19

Thank you for your post and it is greatly appreciated that you have already passed this onto people that you know, and am happy for you to share this onto any of your connections.

Patient quotes are an important part of the process and are taken into consideration for any drug submission approval with the Scottish Medicine Consortium.

Thank you again.

Ann

Helpline support nurse

[e-mail]

The Roy Castle Lung Cancer Foundation