Hi Everyone
I'm brand new to the forum today and wondered if there is anyone who is sharing (or has shared) my experience who would be happy to chat to me about it. Briefly, I'm 75 and otherwise fit being a regular gym attendee plus walking, golf, cycling. I was diagnosed with 4.5cm tumour in the centre of the upper lobe of my right lung in February 2024 after persistent cough led me to have a walk in chest X ray. Upper right lobe removed successfully in July 2024 with surgeon reporting no obvious signs of spread. Recovery went well and was nearly back to previous fitness level. Then after 8 weeks with oncologist weighing up adjuvant treatment options, molecular testing of tumour revealed that I am EGFR+. This led to a recommendation that I should start a 3 year course of targeted adjuvant treatment of a daily 80mg tablet of Osimertinib which I commenced 6 weeks ago. Side effects were a severe rash over much of my body and after one week on the tablets I had a TIA event (very minor stroke - jumbled speech lasting about 2 minutes). I was prescribed a daily blood thinner tablet (clopydogrel) and I'm now pretty much back to normal apart from loss of appetite. A week ago at my monthly consultation, my oncologist reduced the Osimertinib dosage to 40mg daily to see how we go. The rash has mostly resolved although I now lack energy have appetite loss and am losing weight. Looking at the list of other possible side effects of Osimertinib and the 3 year course I am tempted to stop taking this drug and take my chances (30 per cent chance of return of cancer which could be aggressive). As you will all appreciate this is much on my mind and I would appreciate your comments.
Thanks and best wishes.
Hi Leedslad and a very warm welcome to the Macmillan Community but sorry to hear about your journey.
Navigating a cancer journey can be such a stressful and challenging time but getting support from people who have walked or are walking the ‘exact same' journey can help a lot. (I have a completely different 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 that you look to join and put up your own post in our dedicated Lung Cancer Support Group.
This group is a safe place 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 link below…….
……. and once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
You can then introduce yourself to the group 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.
The Macmillan Support Line is open between 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 or just a listening ear.
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.
Do get back to me if you need further help navigating the community.
