Afatinib 40mg and swollen lips - The Roy Castle Lu...

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Afatinib 40mg and swollen lips

Prundence007 profile image
8 Replies

Hi all, i have been taken off a target therapy drug called Osimertinib as my cancer has built up a resistance to it after 41/5 years. They are now giving me another target therapy drug called Afatinib 40mg.

Been on this for 10 days have the usual side effects Diarrhea itchy skin. But I now have swollen lips.

I was wondering if anyone else out there has had this side effect, if so can you share any information as how long it lasts or does it go away etc?

Thank you so much and hope everyone is well and getting on with their lives as best as possible.

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8 Replies
BellaBe profile image
BellaBe

Sounds like some kind of allergic response, if I were you I’d definitely tell your oncology team asap.

I also had to change targeted therapies when my first drug became resistant after 3 and a half years.

Completely different set of side effects on the second drug but as this is my last treatment option I’m hoping it stays effective.

Best of luck.

Bella x

Prundence007 profile image
Prundence007 in reply toBellaBe

Thank you so much for your reply. I have talked to the oncology team, they suggested antihistamines.

Hope your drugs work for you and good luck.

Bow-19 profile image
Bow-19

Hi just a thought but if you are EGFR there is a U.K. and worldwide patient support group which you might find useful to join too x

Prundence007 profile image
Prundence007 in reply toBow-19

Thank you so much x

Bow-19 profile image
Bow-19 in reply toPrundence007

Pleasure. I have the ALK mutation and use both ALK groups . I know the U.K. EGFR group has a facebook page. The US worldwide one probably does too xx

Bow-19 profile image
Bow-19

EGFR Positive UK

egfrpositive.org.uk

Bow-19 profile image
Bow-19

egfrcancer.org

RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle

Hi Prudence007

Sorry to hear of your symptoms and I hope the antihistamines have worked, if not and your lips become any worse , do let the oncology team know.

You can get inflammation of the lips with Afatanib and Cancer Research UK has detailed potential side effects to be aware or (not everyone has these) cancerresearchuk.org/about-...

We offer online support groups through zoom, including one for those on treatment, you can view and register for these through this link: roycastle.org/help-and-supp... or you can email our support coordinator Ellen Knapp at ellen.knapp@roycastle.org

If you would like to discuss anything you are welcome to contact us on our ask the nurse helpline 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email us at lungcancerhelp@roycastle.org

The EGFR positive website is very good, informative and supportive, as Bow_19 signposted you to.

I hope you do well with Afatanib and your lips feel more comfortable soon.

Kind regards

Ask the nurse support team

The Roy Castle Lung Cancer Foundation

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