I’m disappointed at not having targeted therapy!

[Llesing]

So I had the results back and Ive been scheduled to start chemo in 2 weeks. I must admit I’m a bit disappointed at not being able to have the targeted therapy. I’d almost pinned the hope on these newer drugs and so being told I didn’t have the right mutation was a bit of a blow. The newer drugs all seem to carry the hope of advanced lung cancer.

So it’s the combined chemo I’m being given, I guess that’s just how it is! I’m just focusing on keeping well and so far there’s been no other symptoms of my cancer, just the nagging cough. It’s such a minor cough that I really don’t think I’d of gone to the doctor, so I’d be living with this without knowing still!! Scary to think!

I guess as I’ve not started the treatment i have the hope of a good response to it. A few weeks ago I didn’t even know these drugs existed and I’ve never had chemo before so who knows, it could work really well!

[Denzie]

Chemotherapy has kept me alive more than seven years past my expected expiration date. This coming October will be 9 years with stage 4 lung adenocarcinoma. When diagnosed I was told I could expect to live 10-15 months with the most aggressive treatment available. Those targeted therapies didn’t exist then.

What chemo are they planning on giving you? We can help you with side effects of hen we know.

[Llesing in reply to Denzie]

Thanks for the reply! Sorry I’ve been delayed I’ve been in hospital for another unrelated issue. I had a bowel blockage, but that’s the reason they found my cancer in the first place so it’s lucky I have the issue (must look for positives!) I’m fully recovered now.

I had my pre appointment today and I start on Pemetrexed and cisplatin next Tuesday. Once every 3 weeks. They will assess in 4 weeks and either continue or if I have a good response keep an eye on me. I still have no symptoms (other than tiredness) so I have to be thankful for that. All this waiting is so hard.

Thanks for your advice!

[Elt79]

Wishing you the best of luck - stay strong and positive 💕

[Bow-19]

Wishing you the best response to your treatment. Do you know what mutation you have? Some people have mutations that don’t have a targeted drug available, but if you know what your mutation is you can see if clinical trials are available or how others with the same mutation are treated x

[JanetteR57]

Understand your disappointment but chemotherapy is not all the same and different agents are often given but in our heads we lump them all together as until we've affected, as you say, we don't know anything about it. As others have said, many are surviving years even on more conventional therapies and combinations of treatments. Lung cancer treatment has changed considerably in the last few years (which is why the internet statistics are so wrong and dangerous as they fail to tell the picture of recent changes) and every type of treatment has changed including surgery, radiotherapy, chemo doses/agents, immunotherapy, targeted agents and the combinations/orders in which treatments are given. Despite this I've met patients in the last few years who have survived 20+ years before these treatments were introduced - my own diagnosis was in jan 2011 and I didn't qualify for the only test back then for EGFR but had surgery to remove half my left lung with the tumour. good luck and keep up hope.

[Llesing in reply to JanetteR57]

Thanks for your kind words of encouragement. This is a horrible journey but I’m glad to be starting treatment soon so I can fight this, at the moment the waiting is the worst bit. X

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Llesing

Your disappointment is understandable and there have been some encouraging replies on survival despite the odds and some good response to treatment.

Wishing you all the very best and if you need to discuss anything you can call us on our Freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team