Anyone there on OSIMERTINIB tablets?

[Kasuku]

Kasuku.

Started on OSIMERTINIB ( Tagrisso ).

I was recently diagnosed with stage 4 NSCLC in May 2022 with Mets to diaphram and pleural both lungs.

Checking if there is anyone on this treatment and how they are getting along.

Thank you

Kasuku

[Major]

I started Osimertinib in April this year after dx nsclc stage 4 with mets in spine. I also joined the EGFR+ facebook group, most of whom take osi, some for a few years. I have tolerated it well so far. Just a crop of acne and now the ends of my fingers are cracking. But no nausea or diarrhoea, which I understand are common.Hope it goes well for you too. My first scan to check it's working will be in July, but I feel really well.

[Kasuku in reply to Major]

Thank you very much Major for your response. All the best in your treatment and the coming scan. Stay positive.So far so good for me.

Keeping focused and strong in this journey.

[Goldmoon]

Hi Kasuku,

I’ve been on Tagrisso since July last year, I did have a skin reaction on my face soon after starting it so I stopped whilst they treated it (successfully it went away) then I restarted on lower dose and gradually rebuilt up the dose. I feel really well since taking it, regained energy, and it sopped breathlessness. I feel very lucky at the moment it is helping me, my first scan showed a good improvement and scans since have been slight improvement but stable. Stay as positive as you can Kasuku and I hope this helps, I’m bit careful with skin since breakout and use fragrance free face moisturisers now but it’s fine. I also drink quite a few glasses of water throughput day as I was advised to do, Kind thoughts Barbara

[Kasuku in reply to Goldmoon]

Hi Barbara, it is good to hear from you. Very reassuring. This was so abrupt to me, but I thank God I was started on this treatment. Also getting in touch with you and others on this journey will keep me motivated and moving on.Thank you very much.

[Goldmoon]

Hi again Kasuku, yes my diagnosis knocked me off my feet, just thought I probably had a chest infection and needed a course of antibiotics! We have to work with life gives us don’t we, can I just say Kasuku (especially at the beginning of my diagnosis) I listened to Pure Rasa on You tube, she does guided meditation and it really helped to calm my busy, scared mind. She does many healing ones, my favourite is Healing by influencing body cells, but if you fancy giving one a try just see what you fancy. If it’s not for you that’s fine, thinking of you, Barbara

Also Major hope your scan results are good, my consultant told me at the beginning that if I get a stable result from scan that is good, naturally we all hope for some improvement it’s even better,

Kind thoughts,

Barbara

[Rusty821]

Hi KasukuI started on tablets 80mg about 5 months ago and was waiting for some reaction but luckily I seem to have gotten away with it ( at least so far) previous to that I was on afatinib and boy did I suffer my skin was awful but I understand they don’t use it much now

Keep positive they are making headway all the time with treatments. X

[Kasuku in reply to Rusty821]

Hi Rusty821, thank you for your response and reassurance. I was started on 40mg and once I tolerate it I will go on to 80 mg the full dose. So far so good.Staying positive is the key, taking one day at a time.

[ScotchSteve]

Hi Kasuku,A bit late here but thought worth replying. I've been on Osimertinib for 2yrs with little side effects other than some acne. DX aged 46, small lesion on lung, couple in liver, 3or 4 vertebrae & a small one on the brain. Osi has done a great job on reducing/clearing these. Obviously we are all different but I've remained very fit & active being a regular runner & cyclist.

Whilst there is a list of side effects the length of your arm Osi seems to be generally well tolerated, key point as noted keep hydrated, I aim for at least 2.5l of fluid a day.

As Major mentioned there is a private EGFR Positive UK Facebook group & I would strongly recommend joining that (I only joined Facebook for that group) it is a very supportive, friendly place & if you have any questions about treatment, side effects or even just practical things it's a fantastic EGFR specific resource.

[Kasuku in reply to ScotchSteve]

Hallo ScotchSteve.It is ok, better late than never.

Thank you for your motivating response. I am on 40 mg OSI, so far so good, tolerating well, going for my walks and staying hydrated. I am going for my Oncology review on 5th July and possibly start on the full dose 80mg.

Let us keep on moving on, staying positive.