EGFR

[Dexter68]

Further to my previous post, can any of you give me some indication of what is expected with the above diagnoses. Mum will be starting of Getting in next week.

[Dexter68]

Predictive text! Gefitnib.

[pollyalison in reply to Dexter68]

Hi Dexter68,

The treatment is much less debilitating than standard chemo and works really well generally. Mine is in lungs, lymph nodes and pelvis/spine but not in liver as yet so I don’t know how the liver part will affect her. For two years I have lived a perfectly normal life with a couple of quick hospital stays for infection as a precaution. I have been able to ho on holiday and get out and about. I gave up work in August and am now retired officially. Side effects I got on gefitinib was facial acne urghhhh!!! Dry skin , constipated although most people get diahorrhoea. Some suffer mouth ulcers but I didn’t. There are a lot of possible side effects but everyone doesn’t get them all. Hope this helps, and specific advice or questions, just ask.

Alison xx

[Dexter68 in reply to pollyalison]

They have advised mums is in bones and liver as well. Such a shock as the day before she spent the whole day shopping with me in the city. Started as pain in side, which docs thought blood clot, 1 week later diagnosis of this. Totally overwhelmed. Do you have any pain as mum dose not?

[pollyalison in reply to Dexter68]

I never had pain or symptoms, just a small pea sized lump in my neck which I only found as my stepson has mumps and we were all checking our necks for mumps symptoms. Two years on still no pain or symptoms except for side effects. Hope your mum is the same x

[dizzie-wh]

Hi again Dexter, I agree with Pollyalison & had some of the side-effects listed on the amazing leaflet that comes with the Gefitinib packaging. I also have mets in my liver and Gefitinib or Giffy as others call it held that at bay too. Hope your Mum has a Macmillan or similar nurse assigned to her, as they are fonts of all knowledge in dealing with side-effects. All the best to you both Diz xx

[JanetteR57]

Having EGFR mutation is a good thing as it was one of the first recognised markers in lung cancer so treatments have been around a while longer than some of the other now known markers (ALK, ROS1, KRas and now some of the targeted therapies attacking PD1/PDL1 in immunotherapy). In recent years, the options have expanded as several drug companies develop their treatments and clinical trials report their outcomes that more often than not, result in a change of clinical practice to benefit more people. The latest one to change practice is Duvurlimab (unsure if that's how it's spelt) that was announced at ESMO conference in the autumn for stage III inoperable NSCLC. The pharma companies have to list all known side effects and their 'grade' of severity but anecdotally patients experience more or different from these so it's important to tell your doctor/consultant/nurse if you experience side effects (however severe or not they are) as the powers that be are still collecting information on these all the time. I know several patients who have survived many years now on targeted treatments such as these despite being told they would not live long. In the intervening period, more and more has been learnt and developed for lung cancer patients so here's hoping you get a good response. best wishes

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Dexter

There have been some wonderful responses to your question, of which there is not much to add to.

As has been said previously to ask for as much information as you can from the specialist nurse, they are a wealth of valuable information.

This link may be of interest from cancer research UK on Gefitinib - it provides lots of useful information on what to expect, and management if any side effects.

cancerresearchuk.org/about-...

If you wish to discuss anything you can call us on our free nurse led helpline number on 0800 358 7200

All the best for your Mum in her treatment.

The Roy Castle Support Team

[Alisonrahill]

I was diagnosed in January and have been o Gefitinib since February. I have nsclc in both lungs and my last scan on October showed brilliant results the tumours have shrunk loads. The worst side effects have been a rash on face and chest and a very itchy scalp but nothing I couldn't cope with. Hope your mum is ok x