3 year anniversary - stage 4 EFGR Lung Cancer diagnosis.

Thank you for sharing NannyH  I am so glad to hear you are doing so well. 

I’m so glad this is working for you. My mums lung cancer returned in November 2023 (original diagnosis November 2020), she was told stage 4 and widespread mets, she was offered osimertinib as she was egfr posotive (exon 18 and exon 20), she wasn’t on it for 4 weeks before treatment was stopped due to poor kidney and heart function. She is now on palliative care with a prognosis of 6 months. 
The exon 20 mutation is very rare with limited data and is resistant to the tki x

Thank you for this. I've just been diagnosed with the same as you. Got my first appointment with oncologist tomorrow to discuss possible treatment and it is so good to hear a positive story. I'm hoping that whatever I can have will help with my symptoms as I'm so breathless right now which has come as a huge shock having been a very active person until this came on 2 months ago 

I’m so sorry to hear about your recent diagnosis and hope you’ll receive some positive news regarding treatment options tomorrow.

During my first appointment I was given a contact card for the Advanced Lung Cancer Nurses at the hospital who I can contact anytime for any help and advice I need.
I tried to take everything in that I was being told during the Ist appointment but tbh I was still in a state of shock and not in the right head space to absorb all the information, but I had my husband with me and he was able to help. 
I hope you have someone going with you for support. 

It’s a very easy thing to say ‘stay positive’ but dig deep, we all have it in us to fight when we really need to. 

If I can ever be of any help please don’t hesitate to get in touch. 

Stay Strong

xPam

Thanks Pam. I've been having investigations through resp team at local hospital and have had really good support from the lung cancer nurses so far. As I've got a pleural effusion that has needed to be drained I've also had good support from the pleural team and the pleural specialist consultant who has seen me several times. Tomorrow is first appointment with anyone at the cancer centre so no doubt there'll be lots of new people we will need to get to know. We're really lucky to have cancer centre pretty much on doorstep - must be so hard for people who have to travel long distances for treatment. It feels like forever since I had the cxr that showed up malignancy but it's less than a month. I just feel like my body really needs some help in dealing with the cancer now. 

My husband is coming with me tomorrow and I've got a list of questions on my phone that I will check off with consultant. I had a stroke last year (was just celebrating a year and full recovery when this hit me!) which helped me get used to dealing with complicated consultations. I can't imagine what it must be like facing something like this alone. 

Sounds like you have had a hell of a lot to contend with health wise in the last year or so. Well done on your recovery from your stroke, that must have been a very scary thing to go through. 
I’m also fortunate to live just a 10 minute drive from the Cancer Centre where I’m treated, which as you say makes attending appointments a lot easier. I hope the pleural effusion has helped with your breathing and you received positive news and answers to your questions today. xPam

Thanks Pam. Positive appointment today - they seem quite optimistic that I should respond well to the targeted treatment and that it's generally well tolerated. Still got a bit of a wait to get started that I could do without tbh. Having my chest drained again tomorrow and then getting an indwelling drain put in next week. They seem to think it should dry up after a few weeks of treatment so I could have the drain removed then. So all in all a good day in cancer world.

Thats good positive news, so pleased for you.

Im taking Osimertinib (Tagrisso). Each 30 day cycle of tablets is authorised by the Oncologist.
I have a monthly blood test with the nurses and if the results are ok, I collect the next 30 days of tablets the following day, again with the nurses. They also book the next two appointments for the following month.

During the appointment I also have my weight, blood pressure & blood oxygen taken. I was also given an occasional ecg in the early days of treatment. It’s reassuring to know that you are being well monitored whilst you’re on the treatment. 
My Oncologist appointments were every months to start with but are now approx every 3 months as I’m coping well on the treatment with no serious side effects.
At the Oncology appointment they usually book my next CT scan too. I hope I’m not repeating what you’ve already been told yourself, just thought a little idea of the likely routine might help.Im sure if you type in the name of the tablets you’ll be on you will find others on here that you can compare notes with, although everyone reacts differently of course.

I hope your breathing continues to improve, it must be such a relief especially in this hot weather. If you feel like sharing your experience once you start you’re treatment, please do. Hope it starts asap. Stay positive and take care xPam

That's the drug I will be on so hope I have a similarly positive experience to you and the routine does sound similar. Number of appointments seems compatible with getting on with life too which is a big bonus. Would be good to stay in touch to compare notes if that's ok with you?

Of course, that would be good.