Osimertinib

FormerMember
FormerMember
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Hi, I am new to the group. I am here, because in January of this year after a dry cough, I was diagnosed with Stage 4 lung cancer. I have a tumour in my right lung, a tumour in my spleen, and cancer in my left adrenal gland and throughout my whole spine. I also had a blood clot in both lungs.

I am 56, never smoked, social drinker, kept an eye on my weight, am outdoors in the countryside and awful lot and a vegetarian for 51 years. I really thought I was the last person to hear this news.

I am not curable, but am manageable and so far things are going very well. I started treatment in March and take Osimertinib 80 mg once a day.

I would like to hear from others who are on this treatment and how long long they have been on it.

Thank you for reading, whoever you are and whatever you are going through, keep strong, keep going, never give up. I wish you well.

Etty

  • Hi  and a very warm welcome to the Community but sorry to hear about your diagnoses.

    Navigating the cancer journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' cancer journey can help a lot. (I have a completely different incurable cancer).

    This New to Community area is like our reception desk where we look to try and direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend you join and post in some of our dedicated support groups. These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

    To connect in with the group please click on the links below…….

    Lung Cancer

    Living with incurable cancer - incurable patients only (Please join the group but for everyones safety this will then have to be approved by the Macmillan Community Team so will not happen immediately)

    …… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.

    When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [ + ] in the top right of the group page.

    You can copy and paste the text from this post into your new post.

    You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

    We also have our Ask an Expert section but do allow 3 working days for a reply.

    Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and give support to all the family.

    Do get back to me if you need further help navigating the community.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Etty, welcome to the group! I'm so sorry to hear about your diagnosis, it must have been a huge shock to you. You're right, you wouldn't expect it given your healthy lifestyle. I can only imagine how tough it must be to come to terms with it.

    It's great to hear that your treatment is going well so far, and that you're managing your condition. Osimertinib is a powerful medication, and I'm sure it's not easy to deal with the side effects.

    I'm sure you'll connect with others here who are going through similar experiences. It's amazing that you're reaching out and wanting to support others, despite what you're going through yourself. Your positivity and resilience are truly inspiring.

    Keep strong, indeed! You're an example to all of us. I wish you all the best, and I'm sending you lots of love and support