NSCLC diagnosed with Stage 4 - non curable

Hi, I started on osimertinib one month ago and am also stage 4. Like you, I've got dry skin, though my spots are more like acne than hives. I've got some Doxycycline tablets to help with that. I'm feeling pretty well in myself generally, only mild pain and managing my usual activities ok. I hope the osimertinib helps ease your symptoms soon. Fingers crossed we both get a good long run of time with it working for us! 

Hi Control Freak,

Thanks for your reply, I’m struggling with my usual activities because of my weakness, due to the number of mets in my spine and skull, I’ve already had a fractured pelvis - tripped over the dog. It’s healed now thankfully but I still have weakness which stops my normal activity. 
I also hope this gives us a long, quality of life - desperate to see my grandchildren grow 

It’s nice to hear from you!

Hi, sorry to hear about your experience, I too have been diagnosed on 1st of March 2021 with stage 4 lung adenocarcinoma, incurable, luckily I have dexon 19 deletion, so a candidate for osimertinib.

All my cancer symptoms went away after 3 days of treatment, I have almost no side effects, one or two odd pimples, but I am 33 years old, and the cancer is in both lungs and nearby lymph nodes. 

Have you had any scan to see if there's any improvement? I'm supposed to have a scan after 2nd cycle.

Wish you all the best. 

It's nearly 2 years since I was diagnosed with advanced lung cancer, never smoked.  Since then have had chemo and then immunotherapy which was going well for a year but is no longer effective.  Back to some fairly nasty chemo.  Tumour has spread to liver.  Fatigue and weakness are the worst part, but just want to encourage you to keep going and live as fully as you can while acknowledging your weaknesses and rest when necessary.  

Hi there,

I was admitted to hospital last Tuesday by my consultant because he was concerned about how I was. I had an 8 hour treatment with chemo and immunotherapy. I felt the strongest in 6 months the day after. I know I won’t feel like that in a few days. 
Osmertinib was not working after 8 weeks of taking it.

I feel better in myself already from stopping it.

Really pleased to hear its working for you, sounds like it’s working well. Hopefully we will both do well in the next few months!

Hi jemimapuss,

After an admission to hospital last Tuesday I’ve now swapped to Chemo and immunotherapy- I had a combination of chemo and immuno on my first treatment.

As soon as I stopped the Osimertinib I felt better, it’s about finding the right treatment. 
Thank you for encouraging me, although I have a large spread of mets I am determined to live for as long as possible- I am determined to get back to normal activities. I wish you all the best with the chemo. 

I was diagnosed with Stage IV Lung Cancer on Feb 1st 2019 (T3 N3 M1a). Luckily I had private health insurance so was able to start on Osimertinib/Tagrisso straightaway (wasn't available on the NHS at that time as a Stage 1 treatment). Due for my next scan at the end of May/beginning of June but to date I have been stable with no significant side effects. The data for Osimertinib gives a median of 18 months Progression Free Symptoms so I think I have been extremely lucky so far.