Anyone else on osimertinib?

[JoRw]

Hi, I've met with the oncologist today and been put on osimertinib. Apparently I have an EGFR mutation and it's not curable but this will stop it for a while. I had a lobectomy last year and we thought we'd got rid of the cancer then but it seems not! Is anyone else in a similar situation or have any experience of this? Thanks.

[September1957]

not the lobectomy but have been on osimertinib for 11 months - it is the best TKI I have had and his minimal side effects and has halted the growth of two tumor sites giving me very good quality of life. Only draw back is it does stop working at some point - median is 16 months - but varies from patient to patient by wide margin - some have done 3 or more years.

Mine has started to break out in a new site so will be saying goodby to trusted friend some time soon - good luck with your response lasting a long time.

[JoRw in reply to September1957]

Thank you! Yes, they explained to me that it won't last forever, just keeping fingers crossed that I get a good chunk of time on it. They've said that apart from that I just need to hope for a new drug to be developed. Bit of a shock to say the least. Are they able to try anything else with you now?

[ScotchSteve in reply to JoRw]

Hi Jo,

Like you I’m also EGFR positive, I’ve been on Osimertinib for 10months since my diagnosis in June 2020, as noted it generally has minimal side effects, personally I’ve had very little some acne like spots in the first for 2-3 wks that disappeared as my body got used to it.

In terms of background, it is the third generation or latest targeted therapy available for EGRF+ mutations, unfortunately it will stop working at some point but as September 1957 notes that time varies widely, I don’t think that the really understand why, but the good news is that there is a lot of ongoing research in this area with new treatments & combinations constantly being looked at and I’m keeping my fingers crossed that’ll keep going.

Whilst this forum is a great resource I am also a member of a specific Facebook group “EGFR Positive UK” – that as the name suggests it for people with this particular mutation, it is a relatively small group and it is very friendly with a whole lot of knowledge amongst the members so I would highly recommend you look to join that as it can be useful if you have any questions on side effects, future treatments etc.

All the best

Steve

[JoRw in reply to ScotchSteve]

Thanks Steve, that's all really useful. As I'm sure you understand, it's been quite overwhelming! I'll find the Facebook group. No side effects yet... (Day 3!)