Tagrisso users

[Mrsmilo]

Hi everyone. I do hope today is a 'good' day for you. I was wondering if there is anyone on here that, like myself, is receiving targeted therapy with a drug called Tagrisso? Despite my oncologist helping with additional side effects advice and treatment, I'm finding it very hard going and would like to find someone else whose taking this drug so we can, perhaps, share experiences and support each other through such difficult times. Thank you for reading this and I wish you all well.

[Lynn2202]

I'm a lung cancer nurse specialist and direct our patients with an EGFR mutation to the online support group. Are you aware of them EGFR Positive UK? You will find a lot of helpful information on there? egfrpositive.org.uk

EGFR Positive UK: Home

Hope this is useful x

[Mrsmilo in reply to Lynn2202]

No I wasn't aware of EGFR Positive UK but I have now reached out to them and have begun to read all the articles and information on there. Its all very helpful and useful so thanks very much for that, Lynn x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Mrsmilo

It can feel very isolating having cancer and Lynn2202 has signposted you to an excellent patient driven charity EGFR positive UK.

We have an online support group through zoom for those living with lung cancer and you are welcome to join, you can view these and register through this link: roycastle.org/help-and-supp...

As you live in France, you may also find local support groups in your area, or your oncology team may direct you to some face to face support groups.

You are welcome to access any of our information booklets that you can download and this one is for those on targeted therapy: roycastle.org/app/uploads/2...

Cancer Research UK have some good information on Tagrisso: cancerresearchuk.org/about-...

You are welcome to contact us if you would like to discuss anything or have a chat, our ask the nurse helpline number is 00 44 800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively our email is [e-mail]

I hope you find support and encouragement in the forum.

Kind regards

Ask the nurse team

The Roy Castle Support Team

[JanetteR57]

Sorry to hear you're having difficulties on your treatment. As others have said EGFR+UK is a highly supportive group and there are Facebook groups. You may also find LUCE and ELF (European Lung Foundation) have information on support groups specific to France. hope you find the support you're seeking soon. good luck with your treatment. lungcancereurope.eu/

[SwimmingInTheSun]

Hi Mrsmilo,

I have been taking Tagrisso (Osimertinib) since early July.

Initially, the side effects were almost unnoticeable. I just had bit of redness on my face, particularly after a warm/hot shower (it's winter here in Australia) and a bit of diarrohea here and there.

The last week or so though I have noticed more dryness on my face, bumpy skin on my chest and back. I have been gently scrubbing those spots as the skin seems to be slothing off when I shower anyway.

My stomach / bowels are also getting more upset. Sometimes it feels like there is a burning in my stomach. I've always taken the pill with food in hope that it would not impact my gut so much, but....

I am having more cramping, diarrohea, and feel more nausea also. I'm assuming that the drug may take more of a toll over time, but I don't know.

What are you struggling with? How long have you been taking it?

Wishing you more good days ahead. x

[Mrsmilo in reply to SwimmingInTheSun]

Thank you so much for your reply @SwimmingInThe Sun. I'm so sorry this is a bit late but I was rushed off to hospital with fluid on my heart and lung about 10 days ago which has so far required 4 drainage procedures. I did have some side effects from my lung cancer to start with but they've always got much worse when I've been put on Tagrisso so I've been put on and off it many times, including decreasing the dose. The oncologists think the fluid is nothing to do with the Tagrisso but I'm wondering if it's made the existing matters worse as I have literally zero quality of life and am now largely bed bound. Good days are a rare luxury. Surely things shouldn't be this bad?? I know we're all different so one size does not fit all. I've been taking Tagrisso since the end of April but there have been so many complications. Unfortunately my oncologist has been on hols for weeks and, unless I'm actually staying in hospital like now, her team just keep referring me to my GP or A&E. I'm sorry to hear of your own side effects. I get the same ones except for the diarrhoea and yes, they do seem to be intensifying in time. When I first started taking them I was absolutely covered in a horrendous measles-like itchy rash all over my body yet the oncologist has still kept adjusting them until the rash was under control (by myself, I hasten to add!) Yet everything else has steadily got worse and I've literally had to buy a brand new drugs cabinet to hold all my side effects meds in. Im a nervous wreck because of all this!Thank God I'm being very well looked after in the hospital is all I can say! I wonder sometimes if the drug gets to a point where its no longer as effective and needs to be changed? I'm glad to hear it was initially working for you though. Wishing you all the very best on your road to recovery x

[SuzyB24]

are you getting it via a tablet

[Mrsmilo in reply to SuzyB24]

Yes, I was getting the treatment via tablet. I say 'was' because fortunately my oncology dept has seen sense and decided to take me off Tagrisso because of all the problems it was causing me. I was so weak, its taken 3 weeks in hospital on steroids, various vitamin cocktails and lots of rest to get my strength back up. I'm now on chemo instead.