PATIENT EXPERIENCE OF PEMBROLIZUMAB (KEYTRUDA)

[RoyCastleHelpline]

PEMBOLIZUMAB (KEYTRUDA) will shortly be assessed by the Scottish Medicine Consortium (SMC) for use in NHS Scotland with two indications:

1. In combination with platinum-based chemotherapy for the neoadjuvant (treatment given before surgery) and then continued as monotherapy (single treatment) for the treatment of resectable non-small cell lung cancer at high risk of recurrence in adults.

2. Monotherapy for the adjuvant (after surgery) treatment of adults with non-small cell lung carcinoma who are at high risk of recurrence following complete resection and platinum-based chemotherapy.

We have been invited to provide a Patient Group Submission for each of the indications of this medicine, and are therefore trying to gather some patient 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 was your experience of Pembrolizumab, any side effects and were they managed well.

How did being on Pembrolizumab affect your quality of life?

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

Would you have preferred to have treatment before 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

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

Thank you in advance.

The Roy Castle Support Team

[Cosmic54]

Side effects while on Keytruda treatment was sickness, diarrhoea, tiredness, headache sometimes my skin was a little sore, indigestion but all could be sorted with OTC meds if I was tired I just slept or at least paced myself I was lucky I had nothing major going on with this liquid gold 👍

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to Cosmic54]

Hi Cosmic54

Thank you for your valued feedback, this is much appreciated. It is helpful to hear of others experience and it assists with the process of being involved in the submission of medicines. Patient experience and any quotes they may provide (of which no names are revealed) are taken into consideration at the meetings for these submissions.

I hope you are well and thank you for taking the time to respond.

Kind regards

The Roy Castle Support Team

[Ellejayb]

I have been on it for five and half years having been diagnosed with inoperable Stage IV NSLC in Jan 2019 - three-weekly with chemo at the outset and now every three months. I have had minor side effects only like itching.

[Cosmic54 in reply to Ellejayb]

Hi Ellejayb are u having Keutruda privately? I had to go private because my 2 years was up. I’m now on a sister drug.

[Ellejayb in reply to Cosmic54]

Yes, I had a private BUPA policy so decided to keep going. I think the two years probably give the same results though, it’s more a psychological thing.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Ellejayb

Thank you for giving the time to provide some feedback, this is really helpful.

Hope you continue to be well.

Kind regards

The Roy Castle Support Team

[Elt79]

I was treated with Pembrolizumab from November 2018 - November 2020 for Stage 4 NSCLC with brain and adrenal mets. Side effects during treatment were not major in comparison to others I have heard. Mainly allergy related with horrendous skin itching and exacerbated hay fever type symptoms and some fatigue. I was given Fexofenadine antihistamine which I still take daily. Since finishing treatment side effects have remained and have also developed very thin skin on my arms which is not the best. I had expected side effects to disappear after ending treatment but not so in my case. However with my very poor prognosis and am eternally grateful for the treatment.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Elt79

Thank you for your feedback, it is good to hear different accounts as everyone reacts and responds differently.

I am sorry to hear that you are left with some side effects of which I hope are manageable. This treatment can make a huge difference for many people in destroying the cancer cells and provide that extension of life.

I hope you continue to be well and thank you again for taking the time to share your experience.

The Roy Castle Support Team