Tagrisso

[breethecorgi]

Hi

I just found out I will be starting on Tagrisso, anyone else on this? What are your side effects?

[mikee2all]

I have been taking Tag for 3 months. The side affects seem to be dry itchy skin, mouth sores, nausea, light headed feeling, off balance, fatigue.

It's very expensive if your paying for it yourself. I have yet to see if it's working.

[breethecorgi in reply to mikee2all]

Thanks for your reply, looks like you’re having a difficult time with the side effects. Hope it works for you.

[Beepers7]

I have been taking Tagrisso for three years. I was diagnosed with stage 3 lung cancer with EGFR mutation in August 2019. It is a miracle drug. I know of many others taking it with fantastic results.

The side effects are all manageable and different for every individual. You will do just fine. It is an expensive drug, but hopefully you can get help at reducing the cost.

Hope this helps. Be brave and fight on my friend.

💕🙏

[breethecorgi in reply to Beepers7]

Thank you so much for your support, this gives me hope.

[Major]

I've been on this drug for 2 years after stage 4 lung cancer diagnosis. It has shrunk my primary tumour and the bone mets in my spine have all resolved. I have an itchy skin, spots, flaky thin nails and dry bushy hair. I know nausea and diarrhoea are common too. It has not stopped me leading a 90% normal life. There are other groups that provide lots of information and tips if you're on this drug. I find EGFR+ UK really helpful. Hope you get on well with it.

[breethecorgi]

Thanks for your reply that’s an amazing result it seems like a miracle drug. Not looking forward to the side effects but I know I will find ways of dealing with it.

[Kasuku]

I have been on Tagrisso since June 2022 after a diagnosis of stage 4 non small cell lung cancer. So far so good. I get small mouth ulcerations which go off with mouth wash. I was initially seen every 4 weeks, bloods done, scans every 3 months. Now I am seen every eight weeks. My last two scans show a lot of improvement, no more metastasis, no more progression of the cancer.

I have continued with my normal life, remaining positive. Most of the time I don't remember I have cancer, unless I am talking about it to someone.

Wishing you all the best in your treatment.

[breethecorgi in reply to Kasuku]

Thanks for replying, that’s such a great result I’m so happy for you. Fingers crossed I will be the same.

[Kazzacrazy]

I've been on it 5 weeks unfortunately I've had some rotten side effects, skin rash, diarrhoea and stomach cramps, sore nails dry skin. I've had to have antibiotics for my rash and they're treating all the other symptoms. Drink plenty of water it really dries you out.

[breethecorgi in reply to Kazzacrazy]

I’m sorry you are having a hard time, I hope it starts to improve for you, I’ve read that side effects can come and go. Thanks for the water tip.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Welcome to the forum and hope you find this a place of encouragement and support.

There have been some encouraging replies to your post and I have placed some links below that may be helpful for you.

You may find this link from Cancer Research UK on Targrisso helpful: cancerresearchuk.org/about-...

You may or may not be aware of the EGFR patient driven charity within the UK, but here is the link: egfrpositive.org.uk/

They also have their own face book page: facebook.com/groups/2805110...

Everyone is different in their experience of lung cancer treatment, you will be monitored well by the oncology team and if you develop any new or change in symptoms/side effects, usually they can be managed well and do let your oncology team know.

We have online group support sessions through zoom and if you are interested in these you can register through this link: roycastle.org/help-and-supp...

Our genetic mutation driven lung cancer support group is on Wednesday 6.30pm-7.30pm through zoom and all are welcome.

If there is anything you would like to discuss you can email ask the nurse at [e-mail] or call our fee phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Hope all goes well for you.

The Roy Castle Support Team