Afatinib - practical advice needed

Hi Sue2020,

Sorry you are going through this. I was in Afatinib as a trial back in 2015 for 18 months. For the first 2-3 weeks I was on 40mg but like you my weight was very low and I seemed to get all the nasty side effects. They reduced it to 30mg and this adjustment helped. I only got a few spots so was lucky on that front.

It looks like they have taken your weight into consideration so hopefully you’ll be more able to tolerate it without too many problems. 
I wish you all the best and hope you get a good outcome.

little-fi x

Many thanks for this, little-fi. Did you end up on a different drug (better? worse?)

Sue2020

The trial was discontinued with no explanation. My cancer unfortunately returned a month later and major surgery was next line of treatment. I had throat cancer at that time but I’ve read there are good results for lung cancer and Afatinib.

little-fi x

Again, thanks for sharing. Wishing you all the very best!
Sue2020

Hello Sue 2020, ask whether you would be a candidate for treatment with Tagrisso/Osimertinb? It has a lot less side effects

Hi John Boy2, Thanks for responding. I did ask the oncologist early on about Tagrisso, because I had read that it was very effective, but she said the NHS had not approved it as a first line treatment. 
I am now on day 19 of 20mg of Afatinib (the lowest possible dose) and so far the side effects have been very manageable. I just worry that the lowest dose is also the least effective. We’ll find out when I have a CT scan at the end of Sept or early Oct. If it has not been effective, I will definitely ask about Tagrisso again. At that point it won’t be the first line anymore so maybe she will consider it.

That's now incorrect regarding Tagrisso. This was the case at the beginning of the year as NICE rejected its use as a Stage 1 treatment in September 2019 (I even approached my local MP about this). My funding through company Health Insurance ran out in December this year and at the time I had two options:

1. Self fund at over £90,000 a year

2 Revert back to the NHS and be treated with Afatinib

I contacted AstraZenica direct and, after they had discussions with my oncologist, they thankfully agreed to fund my continued treatment with Tagrisso. I was informed by my oncologist some three moths ago that, during the lockdown, the decision was made to license Tagrisso as a Stage 1 treatment on the NHS, so I would ask your oncologist again. I have a monthly bloods, meds, and consultation next Thursday and will confirm with my oncologist that this is still the case.

This is the abbreviated version of my "fight" to initially get treated with Tagrisso, and then to remain on it. I hope this helps you.

Sorry, that should have read March this year not December. It is now just over 19 months since I was diagnosed

I am really glad for you that you won your battle to stay on Tagrisso, but all the articles I read said Tagrisso was rejected because it did not offer "value for money", even though patients clearly lived considerably longer on it than on the alternatives. This seems to also be the case in Scotland, where I live. Yet this drug is fully accepted in other countries (Germany, Australia, etc) , where they have much better survival rates than in the UK. That really sucks!  Even so, I will definitely ask the oncologist again. 

When is your next appointment Sue2020? As I said previously I shall confirm this with my oncologist this Thursday. I don't think it was reported anywhere about this volte face, but I'll let you know.

On a more personal note, whereabouts in Scotland are you? I spent 14 years up there, firstly with the RAF at Leuchars near St. Andrews (now an Army base), and then worked for Motorola at Bathgate until it closed in 2001. I lived in Cupar, Fife. I still travel up occasionally to visit friends