PATIENT EXPERIENCE OF OSIMERTINIB (TAGRISSO) OR LIVING WITH EGFR POSITIVE NON -SMALL CELL LUNG CANCER

[RoyCastleHelpline]

Osimertinib (Tagrisso) in combination with pemetrexed and platinum-based chemotherapy will shortly be assessed by the Scottish Medicines Consortium (SMC) for use in NHS Scotland

The indication this medicine will be assessed under is for the first-line treatment of adult patients with advanced NSCLC whose tumours have EGFR exon 19 deletions or exon 21 (L858R) substitution mutations

We have been invited to provide a Patient Group Submission for the indications of this medicine, and are therefore trying to gather some patient’s 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 EGFR positive lung cancer and how does this affect your quality of life.

What was your experience of Osimertinib (Tagrisso)/ Did you have any side effects and were they managed well.

How did being on Osimertinib (Tagrisso) affect your quality of life?

What has been your experience of treatment options with EGFR positive NSCLC?

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.

Ann Doran

The Roy Castle Lung Cancer Foundation

[Beepers7]

Hi,

I was diagnosed with stage 3A lung cancer EGFR in August 2019. I was first treated with chemotherapy and radiation for 30 days which reduced the size of my tumor. Tagrisso was still in clinical trials. I subsequently had a resection to remove tumor in March 2020. In February of 2021 I was prescribed 80 milligrams of Tagrisso. In February of 2022 my dosage was reduced to 40 grams per my request and oncologist approval. I felt the dosage was limiting my activity of hiking. I continue to take Tagrisso 40 milligrams. No side effects and still NED. I’m now 77 and so blessed by God and my medical team.

SteveO

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to Beepers7]

Hi SteveO

Thank you very much for your reply and sharing your experience of being on Tagrisso, it is so important in our process of any drug submission to the Scottish Medicine Consortium that we have patient experience of both the disease and their treatment.

Any patient quote is anonymous, and I do thank you for posting your reply which will go towards the submission form.

I hope you continue to be well and enjoy your active lifestyle.

If you are interested, our new meeting of managing your treatment online support group starts this evening, you can view and register for this through this link: roycastle.org/help-and-supp... alternatively you can email our support coordinator Ellen Knapp at [e-mail]

Thank you once again.

Ann

Ask the nurse support team

The Roy Castle Lung Cancer Foundation.

[PinkRottie]

I’m new here but have been on Osimertinib for 2 years. I’d be happy to have a chat with anyone about my experience if it would help.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi PinkRottie

Thank you for your post and it would be really good to hear of your experience. (I am unsure if it was yourself that called yesterday) but if not you can call the ask the nurse helpline on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, or you can email me at [e-mail]

Kind regards

Ann

Helpline support nurse

The Roy Castle Lung Cancer Foundation.

[PinkRottie in reply to RoyCastleHelpline]

Hi Ann, it wasn’t me but I’ll certainly call early next week.