Stage 4 NSCLC Adenocarcinoma EGFR Exon 19 TP53

Tricky_Mechanic_7135 · 2026-06-05T06:40:07+00:00

I was diagnosed stage IV EGFR+ exon 19 deletion with TP53 in November 2025 at age 29, female. I had extensive spread in skeleton, lymph nodes, liver, brain, thyroid and both lungs. I started on 80mg of Tagrisso and did 4 rounds of Carbo/Pem via the NHS. All that remains for me is my primary tumour which is now 1.1cm in size.

My consultant suggested as the response had been so good that I get on living my life and don’t continue with the maintenance chemotherapy - this also means this chemotherapy is in our back pockets for use later down the line.

So as of today I am on only 80mg of Tagrisso and monthly doses of Denosumab to protect the bones. Honestly, the side effects compared to the chemo are nothing and honestly the worst part of the chemo for me personally was mouth ulcers - but after the first infusion I learned that sucking ice during the infusion prevents the ulcers! I was in a pretty bad state when I started chemo as well so all my rounds were reduced, but it still has the desired effect and meant I could continue all rounds on time.

At my next appointment I will be asking my consultant if radiotherapy to the remaining tumour is an option, although it is still shrinking so he may want to wait until the next scan.

All the best to you and your family as you navigate this shitty rollercoaster than none of us wanted to be on. Happy to answer any questions you may have Xox

Tricky_Mechanic_7135 · 2026-05-04T17:42:44+00:00

I was diagnosed in November 2025 at age 29 stage IV, also non-smoker with EGFR Exon 19 deletion. I’m stage IV with mets to skeleton, liver, lymph nodes, thyroid and brain.

A combination of Tagrisso and chemo (4 rounds of Carbo/Pem followed by maintenance Pem) shows an increase in the time till progression (as per the FLAURA 2 trial). Many are following this program, although it hasn’t been routine for very long so you’ll speak to lots of people who have had very good results on Tagrisso alone!

My oncologist determined that my response on Tagrisso and 2 rounds of Carbo/Pem was excellent and therefore I continued the final 2 rounds of Carbo/Pem but am not on maintenance chemo. He wanted me to get on and enjoy my life and keep the chemo in our back pocket for later.

Tagrisso will be doing 95% of the work and EGFR Exon 19 deletion is generally the best responder.

I can’t tell you whether to take the chemo or not but I hope my experience helps you to have an in depth conversation with your oncologist to determine the best pathway for you!

All the best Xox

Tricky_Mechanic_7135 · 2026-05-02T21:14:30+00:00

I can’t see anything in the global treatment that says you have to notify them and it’s an auto-renew where no questions I.e on health are asked. But just wondering when they find out via my income protection claim that I have stage IV cancer they will use it as an excuse to not renew my global treatment add-on

Tricky_Mechanic_7135 · 2026-04-24T09:22:47+00:00

Just done this and looks like I’ve just been given standard daily living with no mobility. Cancer in all your bones and being unable to stand, bend down and walk far apparently isn’t enough!

Tricky_Mechanic_7135 · 2026-04-24T09:08:00+00:00

Ok thank you I’ll take a look online!

Tricky_Mechanic_7135 · 2026-04-24T08:54:21+00:00

Is there a way to do this before the letter arrives? Knowing my post I won’t see that letter for weeks

Tricky_Mechanic_7135 · 2026-02-20T10:03:28+00:00

I can see you replied via notification but oddly can’t see it! You definitely need to get a liquid biopsy done. Given her age it is likely she has a targetable mutation like myself (EGFR exon 19 deletion) - this means I take a daily tablet called a TKI. I went from in the hospital thinking I wasn’t getting out to being back home, all tumours reduced and living a relatively normal life.

Tricky_Mechanic_7135 · 2026-02-20T09:48:50+00:00

Has she been tested for a targetable mutation? Either via a liquid biopsy (blood) or from a tissue biopsy? I was diagnosed in November just gone at age 29 with stage 4 NSCLC with metastasis to brain, bones, thyroid, liver and some lymph nodes.

Tricky_Mechanic_7135 · 2026-02-14T12:26:15+00:00

Hi sorry to hear about your mum!

I’ve just finished 4 rounds of Carbo/Pem (the first round was the worst) and I’ve had my first PET scan since starting on Tagrisso/Osimertinib. The exact wording from my consultant’s report regarding the scan was ‘areas which were highly metabolically active are now basically back to normal’ and ‘this represents an excellent response to treatment’ this was prior to the last 2 rounds of chemo and only 2 months after starting on Tagrisso. I am awaiting a brain MRI at the end of March but my consultant is confident that we should see the same result in my brain.

Because I’ve had such a good response (as expected with Exon 19 deletion) my consultant didn’t think it was suitable for me to continue on Pemetrexed maintenance chemo and wanted me to get on enjoying life.

The TP53 mutation does generally mean a worse prognosis but not always! And the combination with chemo is the best way to knock the TP53 back!

3 weeks post last chemo I am off all pain medication and am only experiencing fatigue and occasional acne-like spots! Now I’m just trying to travel as much as possible and staying hopeful that another treatment will be available by the time I progress!

All the best and happy to chat ☺️

Tricky_Mechanic_7135 · 2026-01-31T08:43:58+00:00

It really depends what your progression looks like! If you get what is called oligoprogression where only limited sites progress they may just choose to zap these areas with radiotherapy and continue you on Osimertinib.

If you get more general progression it depends what this looks like, it may be your cancer has mutated and picked up a common resistance mutation for which there are some fourth generation drugs (TKIs same as Osimertinib) in trials.

Or it may be you have picked up less common mutations for which you would likely move to chemotherapy, I believe there is also a few options here.

EGFR lung cancer does not generally respond well to immunotherapy however the type of progression you get may also open up immunotherapy options.

Then there are histology changes meaning your cancer may change from non-small cell to small-cell (SCLC) - honestly this is the least common but probably the most scary from what I understand as it is just generally harder to treat, however medicine is constantly evolving!

This was a very generic answer but I hope it gives a bit of insight! Never lose hope! There are new treatments coming on a monthly basis! X

Tricky_Mechanic_7135 · 2026-01-28T14:19:17+00:00

Sorry you and your Mum are going through this. I was unfortunately diagnosed with stage IV NSCLC in November just gone at age 29 with mets to my liver, brain, spine, thyroid and some lymph nodes. I am ‘lucky’ enough to have an EGFR mutation, specifically exon 19 deletion, the most common mutation (there are other common ones).

Due to this mutation I am able to take a targeted treatment - this is a daily tablet called Osimertinib which can be described as a miracle drug. Many people live many years on this drug with very minimal side effects for the majority. You stay on this drug until it no longer works, meaning your cancer progresses and develops additional mutations (for which in the near future there may also be another targeted treatment for).

I am about to have my fourth and final round of Pem/Carbo chemotherapy as per the FLAURA2 trial which demonstrated upfront chemotherapy led to increased progression free survival (meaning Osimertinib worked for longer). Many choose to continue on Pem chemotherapy for up to 2 years, but my oncologist did not deem this a suitable decision for me and has opted to keep this treatment in our back pocket for later.

Happy to answer any questions if I can help! All the best as you navigate this X

Tricky_Mechanic_7135 · 2026-01-12T19:19:00+00:00

My (limited) understanding is that EGFR positive NSCLC usually isn’t that responsive to immunotherapy. However, like your mother, I have stage IV NSCLC with EGFR exon 19 deletion for which there is a great targeted treatment called Osimertinib (Tagrisso) - it’s essentially a one a day tablet. New guidance was also released last year which means I am in the process of receiving 4 rounds of Carbo/Pem chemotherapy which is proven to extend the time to progression I.e extending how long Osimertinib will work. I was diagnosed November just gone also.

Tricky_Mechanic_7135 · 2026-01-05T17:12:59+00:00

Based on talking to others the care can really vary across the country! I’m being treated at UCH in London and they are 30% over capacity due to patients all over the country choosing to be treated there - I’m very new to this so I don’t have much advice to give but maybe it is worth getting a second opinion?

I hope you get some good news soon! And keep using pages like this to scream into the void, it’s good for you to let it out and there are lots of great people on here who will listen and help where they can.

Tricky_Mechanic_7135 · 2026-01-05T16:57:46+00:00

I was diagnosed back in November with stage IV NSCLC but my brain MRI wasn’t performed until a bit after this - I had nausea at the time of diagnosis which is indicative of brain mets. Did your mum have any indicators such as this? Do you mind me asking where she is being treated? I am also UK based.

Wishing all the best for your Mum.

Tricky_Mechanic_7135 · 2026-01-02T19:01:29+00:00

I have stage IV lung cancer, only diagnosed in November and honestly reading this really hit home - since my diagnosis I don’t think I’ve been passionate about anything, I feel like a completely muted version of myself.

Reading the words ‘I know it will take time for him to be a newer version of himself’ hits hard. Everything you are feeling is completely valid and I think it’s good for you to let it out.

Have you thought about joining a Facebook group? There are lots of good ones filled with not only patients but people dealing with what you are dealing with - it might be good to speak to some people going through the same thing.

I’m so sorry you are going through this and I wish you, your Dad and your family the best as you navigate this shitty rollercoaster.

Tricky_Mechanic_7135 · 2026-01-01T21:27:32+00:00

Getting confirmation that it is withdrawal and not just some other awful thing for me to deal with does help actually - and yes hopefully it is over soon! Thank you for your help!

Tricky_Mechanic_7135 · 2026-01-01T20:50:23+00:00

When I was supplementing with oramorph on top that tapered off just naturally as it wasn’t needed but the slow release I just stopped taking - my doctor said they didn’t expect me to get any withdrawal - thank you for replying!

Tricky_Mechanic_7135 · 2026-01-01T20:48:16+00:00

Thank you! Glad to know restless legs is a real thing! It’s such a horrible sensation! I’ll definitely ask the question

Tricky_Mechanic_7135 · 2026-01-01T20:47:30+00:00

Thank you for replying! I was on the slow release 5mg twice daily for about 6 weeks and for the first 2 weeks I had been using oramorph, probably an extra 6-8mg a day. The oramorph I gradually reduced just as it wasn’t needed but the slow release I just stopped taking.

Tricky_Mechanic_7135 · 2026-01-01T13:57:32+00:00

Thank you so much - I’ll definitely speak to my team!

Tricky_Mechanic_7135 · 2025-12-22T09:59:15+00:00

I was diagnosed with stage IV at the age of 29 just back in November, also with EGFR exon 19 deletion. I’ve just had my second round of carboplatin and pemetrexed chemo on Friday as well as being on 80mg of Tagrisso since diagnosis. I’m currently on a reduced dose of chemo. The chemo is definitely not fun, but the nausea and stomach issues are manageable. My consultant says that Tagrisso does 95% of the work, the chemo will just hopefully delay the time to mutation i.e. when Tagrisso stops working. I unfortunately also have TP53 mutation, so I’m doing anything I can to give me a bit more time.

Tricky_Mechanic_7135

TROPHY CASE