Tagrisso and inflammation

[CAB1968]

I started with an eczema in September 2023. This was the first time I ever had a skin problem. Between Sept to Dec we tried everything to understand why I had developed an eczema ..allergy tests, blood tests, ecographies of organs, colonoscopy, gastroscopy and skin biopsies...all results came back with no abnormalities or allergies. I was treated with cortisone, and everytime we tried to reduce the dose, my eczema would flare up.My dermatologist requested a CT scan and we discovered scarring on my right lung...2 days later I was admitted to the clinic, as the skin on my chest was dry and bleeding, and there was a risk of infection.

2 hours after being admitted, I had a pulmonary embolism and was in the ICU for 4 nights. A PET scan revealed activity and the doctors were 90% sure I had lung cancer, which a biopsy confirmed...NSCLC, and EGFR (Exon 19).

I started Tagrisso mid-January 2024, and have been in remission since May 2024, 2 CT scans confirmed this.

My side effects were 3 days of diahorrea between mid-Jan and May, easily controlled with immodium. My hair started shedding quite a bit in April. And in May I started suffering with joint inflammation...mainly shoulder, wrists and fingers. With Tagrisso we are unable to take anti-inflammatories, only panado 's which are not very effective against this pain.

My oncologist had me stop Tagrisso for 14 days...there was a very small improvement. He wants me to go onto the 40mg dose which we don't get in my country of residence, so we are on 1 pill of 80mg every second day until I can get the 40mg pill.

Next CT scan and blood tests will be in early November.

Anyone else suffer from inflammation?

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello CAB1968,

Sorry to hear about your cancer journey and the skin and joint inflammation you have been experiencing. This must be very difficult to live with. I would advise discussing your symptoms with your Oncology Team, they will be able to advise regarding more effective pain relief. They may suggest a further reduction or suspension of treatment. It is true that anti inflammatory drugs are usually avoided as Tagrisso can lower platelet levels which could increase the risk of side effects such as bleeding or bruising. Your medical team may be able to offer a safer alternative. You might be interested in the information from Macmillan regarding Tagrisso which can be found here: macmillan.org.uk/cancer-inf...

Hopefully other users will share their experiences with you. You may also be interested in looking at our managing lung cancer symptoms leaflet as it contains hints and tips that may be helpful. roycastle.org/app/uploads/2...

We have a range of support services, from one to one support to online support groups through zoom , inlcuding one for EGFR. If you are interested in any of these you can register through this link: roycastle.org/help-and-supp...

These groups may interest you egfrpositive.org.uk/what-is...

facebook.com/groups/2805110... [e-mail]

Our campaign section also provides encouraging accounts from those living with lung cancer: roycastle.org/campaigns/

I hope some of this is helpful. If you do have any further questions, you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

[Cockailschemocancer in reply to RoyCastleHelpline]

Hi there - I had terrible inflammation with a different line of treatment and had to go on high dose of steroids. Fast forward 2 years I now adopt an anti inflammatory diet. No seed oils, nothing processed food wise and adopt things like magnesium, Tumeric, lemon, ginger and garlic. Check if you are allowed any of these things but this helped me! Best wishes.