I am new to this type of forum. After plucking up the courage I decided to join this forum. I would like to meet people with similar issues for support and to share experiences about treatment & prognosis.
I was diagnosed in November 2019, I was baffled (understatement of the year) because I am a non smoker and had no symptoms that warranted seeing my GP. We were on our return flight from Venice, when I was feeling unwell at the airport. The medics at the airport thought that my blood sugar was low because I am a diabetic but that was ruled out. Next, the medics did an ECG & that was Ok. The medics recommended a visit to A&E because I had a chest pain.
Things then snowballed from there. Another ECG, XRays, blood tests, PET/CT SCANs, bronchoscopy & referral to Royal Marsden. Had an MRI and started learning terminology that proved I had so much to learn. I was diagnosed with NSCLC, EGFR +, T2a N3MO.
I started with 40mg Afatinib but the side effects were unbearable. Diarrhoea and skin rash. The oncologist reduced my dosage to 30mg after one cycle but the side effects continued. Dosage was reduced to 20mg on 28 February 2020 with tolerable side effects. Three month scan showed the tumors had decreased. What relief. The medication was working despite the diarrhoea & skin rash.
I am still on 20mg Afatinib. Doing well despite COVID restrictions. I still get anxious every time I have a scan appointment.
Anyone had similar reaction to Afatinib?
Apologies for my lengthy introduction but I will try & be succinct in future posts.
Hi Gran69 and a very warm welcome to the online community
I'm sorry to read about the side effects you've experienced since being on Afatinib but that's great that the medication has worked.
Although I'm not a member of this group I noticed that your post hadn't had any replies yet. This is probably because this is such an active group that it has fallen off the first page before someone with the right experience has seen it. Replying to you will 'bump' it back to the top of the discussion list.
While you're waiting for replies if you type 'afatinib' into the search bar at the top of the page it'll bring up lots of previous posts on this subject. You could have a read through some of them and respond to any of the more recent posts if you think the poster can help you further.
Feeling anxious before scans is a common feeling across all cancer groups and it even has a name - scanxiety! I don't have scans but do have regular check-ups and it's amazing what a sense of relief I feel when I come out.
Wishing you all the best
"Never regret a day in your life, good days give you happiness, bad days give you experience"
