EGFR p.L747_T751de

[Adaughter]

Hi,

Dad’s oncologist has stopped the Erlotinib as last scan in Jan showed tumour growth. Private Liquid biopsy result just back, mutation EGFR p.L747_T751de. No treatment offered by NHS, oncologist thinks will be more harmful to dad but how does he know for sure? I read some PubMed data that restarting Erlotinib a possibility even with previous resistance and Afatinib promising but Oncologist won’t recommend any further treatment and we’re 2 weeks in - he told dad 8 weeks to live.

My dad is 89 and of the generation that whatever the Dr says, you accept. The Dex steroid has given dad a healthy appetite which is good to see as he is a ‘foodie’.

I’m scared we’re missing something to help dad live longer, dad seems stoic but I don’t know if he’s shielding us from how he’s really feeling? I told him “be an exception dad, keep living to prove the Drs wrong”.

I know what people are thinking reading this but Dad says that hope has no side effects.

There are positive stories on this forum, sorry I’m letting you all down but finding it so hard but I don’t cry in front of dad.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

So sorry to read your post and how distressing this must be for you. For some patients, having treatment can reduce their quality of life, or it may be that they base this decision on their blood levels. However, if there has been tumour growth with his Erlotinib treatment, then there would possibly be of no benefit of restarting this.

It is understandable your frustration and anxiety and you want to do everything you can for your dad, and as you know it also depends on what your Dad wants.

Your oncologist is the best person to discuss the reasons for not having treatment, or he would be entitled to a second opinion, this can be done either through the GP or the oncologist.

This link from Cancer Research UK provides information on a second opinion: cancerresearchuk.org/about-...

You may know of the EGFR patient driven website which may be helpful for you: egfrpositive.org.uk/

It is not uncommon for people to appear stoic, when actually they may be at peace with their decision, if your dad wishes to purse treatment then it may be a second opinion is the next course of action.

There are licensing rules for specific cancer treatment and you can find a flow chart of these from the National Institute of Health and Care Excellence: nice.org.uk/guidance/ng122

We rung a carers support group for those with lung cancer , fortnightly, on a Friday 10.00-11.00 and you can register for this through this link: roycastle.org/help-and-supp...

If there is anything you would like to discuss you can call the ask the nurse helpline on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email us at [e-mail]

This must be very upsetting for you and please know we are here to support you in any way that we can. Take good care of yourself

The Roy Castle Support Team