I was diagnosed with stage IV non-small cell lung cancer in January 2015 after experiencing pain from what it turns out was a secondary on my right scapula. I was a 35 year old non-smoker, running ultra marathons for fun so it was a bit of a shock. My biopsy showed that I had a particular mutation that meant I could go on Afatinib (Giotrif). Within 6 months the secondary was no longer visible and the primary had shrunk by over 50%. I had all the usual side effects - the rash calmed down after the first month (I switched all my toiletries and soap powders etc). I got crazy new hair, my fine, poker straight hair is now thick with darker, curly patches. I changed my diet to cut out a lot of soluble fibre but leaving the house without loperamide (Imodium) was never a wise move. All very manageable though.
Early this year (2016) my scans showed some activity on a lymph node and a change in the shape of my primary tumour. I went to see a surgeon about the possibility of a lobectomy. I am still running and wasn't sold on the idea but I was giving it some serious consideration. The surgeon requested more scans, including a brain MRI. The scans showed that the cancer had spread to my brain and further lymph nodes. Surgery was no longer an option but I could have a biopsy to see if I had the resistance mutation and could start on Osimertinib. My oncologist managed to save me from the biopsy and I had the blood test instead which came back negative, however, luckily for me the local hospital had a new bit of kit they wanted to use and re-ran the test which showed I did have the mutation.
I started taking the Osimertinib back in June. I was expecting Afatinib type side effects and was worried the drugs weren't working because other than being quite tired I felt ok. The first scan since changing treatment shows that the cancer is responding to the new drugs which I'm obviously very happy about. I was wondering if anyone else on the site is taking Osimertinib? I've found that I've been a bit constipated and when I'm running I seem to be going a lot slower than I used to be. Little things I know but I wondered if anyone else had a similar experience? I'm the only person my doctor knows on these drugs and she suggested looking at the communities online but I'm struggling to find much.
Thanks in advance and sorry for all the very long post!
Thats wonderful news I'm also on Afatinib we are very lucky to be EGFR positive I did ask my oncologist when Afatinib stops working what next he was saying that Osimertinib was phase 3 and we only develop the right receptor whilst on Afatinib, you where very lucky that your local hospital wanted to test a new bit of kit can you remember the name as I would like to make A he also said there wasn't any side effects.
I'm also a non smoker always been fit and healthy go to a gym but a lot older then you....your so young in your lifetime they will find a cure.
Love to hear from you
Thanks for getting back to me :-) I hope you're doing well on the Afatinib. My oncologist has been really good, we were lucky to get the test results and get the drugs. NICE are currently reviewing Osimertinib and a decision is expected in October as to whether or not it will be made available on the NHS.
I'm not exactly sure what bit of kit the lab used but the test was just a blood test. I believe it was this test although obviously not in the US: http://www.cobasegfrtest.com
Hopefully the Afatinib will keep a lid on your cancer and you won't need to worry about next steps anytime soon.
Hi Zee. I just started on Osmiertinib in early November (2020). How is the long-term going for you?
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