EGFR Afatanib progression

[Webby1rose]

A question to my fellow lung warriors ! I have recently progressed on Afatanib - I am a stage 4 advanced lung cancer with mets to liver and bones throughout. Have had an amazing 9 months on Afatanib but sadly rapid progression has started. Two biopsies have sadly not shown the elusive T790 gene that NICE require to fund another TKI drug called Tagrisso. Has anyone currently received TAGRISSO under temporary NICE Covid ruling ? And could anyone recommend a private biopsy lab to test again for T790. Many thanks for any comments . Regards Sandra

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Webby1rose

Sorry to hear there are changes for you in not being eligible to continue with the Afatinib, and like many of these amazing drugs, they can only continue if they have some effect.

As you know Tagrisso is only suitable if you test positive for the T790M mutation where it can delay the cancer progression.

The temporary ruling from NICE during Covid-19 on treatment choices are still based on treatments that are research evidence based and the decision is from the multidisciplinary team involved.

It may be worth discussing this with your specialist if this will be changing over the next few weeks and if you can access a private biopsy for the T790M mutation.

Although the clinical trials and some cancer care had been put on hold due to Covid-19, these are now being restarted with safety measures, it may be worthwhile asking if there are any clinical trials that you may be eligible for.

If you are interested in looking at this an index of trials and who may be eligible can be found from caner research UK:

cancerresearchuk.org/about-...

If you wish to discuss anything you can either email us at [e-mail] or call our freephone nurse led helpline on 0800 358 7200

Kind regards

The Roy Castle Support Team

[Pollypeck in reply to RoyCastleHelpline]

Are clinical trials still on hold ?

[September1957]

Hi - sorry to hear of your progression. I was on Afatanib and developed brain mets - which are not treated by Afatanib due to the blood brain barrier. Similar to you did not get a T790 identified but the hospital I am with (Guy's Cancer Centre) managed to get me a discretionary supply from Astra Zenica and to date is working. Worth you trying that route?