Non Small Cell Lung Cancer, EGFR - Tagrisso

Hi princess Shelby, welcome to the group, but sorry you find yourself here. 

I have no personal experience of tagrisso, but the side effects you have mentioned are mentioned in this information sheet

osimertinib (tagrisso)

I hope you don't mind me tagging you into this post, but I know you are on tagrisso and wondered if you would like to share your experience. 

All the best 

Certainly Chelle,

Hello Princess Shelby,

I was diagnosed as having Stage IV Metastasis Pulmonary Adenocarcinoma (T3, N3, M1a) with the primary tumour approx. 64mm. After 1 month on Tagrisso it shrunk to 38mm and has been stable ever since. I was initially diagnosed on Feb 1st 2019 and started on Tagrisso in March of that year. I am due another 3 monthly scan next week.

Like you I have had very few side effects, but do suffer from a wheezy chest - annoying but bearable. If there is anything else you would like to know just ask. I used to smoke but gave up in 1988 and the type of lung cancer is associated with non/light smokers. I used to be very active (played rugby at a reasonably high level) but, at the age of 69 and having had hip and knee replacements, my only exercise is darts haha

John

Hi Princess Shelby,

Having just read your post, it resonates with me in terms of my diagnosis etc so thought my experiences might be of use?

I was diagnosed last June (2020) aged 46 and a non smoker. Like yourself I’d had zero symptoms and was very active running 5k three times a week and clocking up 50-100km a week on my bike. A swollen ankle took me to A&E, turned out to be a blood clot, which was my bodys reaction to having Stage 4 lung cancer, primary tumour in my right lung, plus mets to liver and L4, T12, T5 & C? vertebrae & a tiny one in my brain just for good measure!! With hindsight I’d also had a sore back & sciatica pains in the month prior to diagnosis which had limited my running a bit and I’d put down to age/over exercising & ignored, but was the mets in my vertebrae.

I’ve been on Tagrisso for a year and like JohnBoy2 I seem to be doing well on it, the possible side effects appear to be many and varied and tbh from the outset I was sort of expecting to have some kind of nasty thing happen and was forever waiting for them to happen, but so far I’ve got away with just some acne, my breathing has remained unaffected so far.

To begin with because I have mets in 4 vertebrae and I’m also on blood thinners I was worried about doing anything active, so like you was just walking daily, but after about a month that got me down, so I asked my oncologist about the possibility of running again, his response was just take it easy and see how your body reacts etc, so I almost took a couch to 5k approach, run/walk/run etc, now I’m back to getting out 3 times a week like before and whilst maybe I’m slower and don’t push myself as much as I used to I take great satisfaction that I am doing it knowing that this might not always be the case.

Given you're comfortably walking 5km daily it might be just worth checking with your LCNS or oncologist about the wheeziness and running, based on their thoughts you could maybe start doing a sort of run/walk/run to see how you get on? I initially felt very fragile and was worried that I might cause myself more issues, but I'm so glad I took those first steps as now it does me the power of good knowing that I’m exercising my lungs and also the endorphins you get from just moving as it were.

To date I have found this forum useful to read and pick up information and other peoples experiences etc, and have gained some good re-assurance from this. However you may also be aware that there is a specific EGFR+ UK charity which has a Facebook page that I have also joined, it may be worth you joining that as well, obviously by it’s nature there's a lot of people with similar diagnosis & treatment experiences etc which I've found really helpful and in actual fact last week we had a presentation from an exercise physiologist who specialises in lung cancer which was really interesting.

Good luck and all the best.

Steve

Hi, I'm also on Tagrisso, almost 3 months now. I agree about the slight wheeze and my breathing is worse, though still manageable. My first scan since treatment started showed no change so that's good. I used to run 5k but just walk now, hoping to build up to a walk/run if or when I feel more confident. Dry skin and acne are my most annoying side effects so far. I've been given Doxycycline to help. Good luck! If you haven't already found it, there's a very supportive Facebook group 'EGFR positive UK'. 

Thank you chelle

Oops, not used to posting on forums! Thank you Johnboy2, Scotch steve and Control freak for your helpful replies. It is comforting to know that im not alone on this journey.

I admire your determination scotch steve. 

After the initial shock and devastation of the diagnosis, i want to have a postive mindset and live in the present - as much as i can anyway. I will check the fb out tk u.