Dad had results of liquid biopsy and EGFR positive, Oncologist has recommended Erlotinib ( NHS treatment). We understand that his diagnosis T4 N2 M0 is non curative but trying to balance quality of life and length; chemo and a standard biopsy were deemed not tolerable for my 89 yr old dad. Silly thing to say ; apart from the lung cancer, he’s healthy- not a drinker or smoker and healthy diet. So far, weight loss and cough are the symptoms.
We’ve been advised that skin rash and diarrhoea most likely side effects although have been given the whole list ( from Cancer research Uk site). The hope / benefits described are for life extension although in time the drug will become less effective. My lovely dad is taking the decision to ‘ give it a go’ and the monitoring process seems good. Of course, when you come away from the appointment, always miss one question and I will contact the team to ask….don’t know why Tagrisso was not an option, appears to have less side effects; notwithstanding cardiomyopathy which is ‘rare’. ….sorry my mind is overloaded with info, the nurse after the appointment did say that Tagrisso dose cannot be amended so not suitable, I nodded at the time but now unsure if that seems odd?
Just wondered if anyone had experience of either or both drugs and how they fared?
Thank you,
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So sorry to hear about your dad and how distressing this must be for you all.
It may be that Erlotinib may be more tolerable for your dad than the Tagrisso and everyone can react and respond differently to the cancer treatment.
It may be helpful for you to get in contact with those who have the EGFR mutation, they have their own dedicated website for patients and their loved ones at: egfrpositive.org.uk/
Sometimes the side effects and all the information can be quite overwhelming, most of the side effects can be managed well and hopefully your dad will be well on the treatment.
We have a range of support services, from one to one support to online support groups through zoom , if you are interested in any of these you can register through this link: roycastle.org/help-and-supp...
If there is anything else you would like to discuss you can email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600
Hi, now know that EGFR mutation is Exon 19n deletion. Out of interest , peer reviewed publications appear unanimous in stating Tagrisso ( Osimirtinib) better as first line treatment so remains a puzzle why Erlotinib proposed for my dad. Oncologist ringing this week, will clarify. I wonder if anyone on this forum has been in same predicament.
You may find this link from the National Institute for Health Care and Excellence (NICE) of interest on the current treatment guidelines for lung cancer: nice.org.uk/guidance/ng122
If you scroll to the foot of the page you will find a table of the different mutations which you can click on for the licensed recommended treatments.
Tagrisso is licensed for use as adjuvant treatment post surgical resection of lung cancer, however for it to be used if the person has not had surgery, this comes under a managed access agreement, where there is discussion if the NHS will fund the treatment- you can find out about this through this link: nice.org.uk/about/what-we-d...
This could be the hesitation, however it is worth asking them at the appointment and hope you hear from others in the forum.
Kind regards
The Roy Castle Lung Cancer Support Team
0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600
I think Erlotinib is one of the first or second generation drugs of this kind (TKIs). Tagrisso is the latest generation. My oncologist explained me that first generation drugs' binding is reversible, and Tagrisso's is irreversible, which has of course its effect on the treatment itself.
I haven't done liquid biopsy so not sure how precise the report of this is, on my tissue biopsy which was sent for biomarkers and EGFR bring one of them, is stated my tumor will not respond to first generation anti TKI.
So I'd definitely ask what is the reasoning choosing Erlotinib, it could be the side effects, but it could also be the cost to NHS as well ..
Thank you for both replies, the EGFR positive link is very useful, will also download the targeted therapies booklet.
555Violet555, interesting and helpful; I’m sticking to the PubMed type articles to glean information although of course my understanding is as a lay person. I will ask the type of EGFR mutation; we are confident with the Oncologist but just wanted some additional info on why Erlotinib was chosen….it’s difficult, you feel like you’re questioning their expertise and silly as it sounds, would that then mean the cancer team take offence and not make the best efforts with dad. …that sounds crazy but all sorts of thoughts go through your mind and I want the very best treatment for dad.
Meanwhile, one of the team came back and advised E chosen due to less toxicity and side effects would be greater with Tagrisso…which seems to contradict info I have read.
It’s definitely worth asking questions, please don’t feel silly. It’s so important to have your list of questions and advocate for your Dad to ensure that he is getting the best treatment. Some drs have more experience in this area than others. You can also ask for a second opinion if you want to. It is worth posting on the EGFR Facebook pages too so that you can see other’s experiences. Hope that your Dad gets the best treatment for him and the best response too. Non smokers get lung cancer too and this is often an area that people are unaware of as smoking related lung cancers are highlighted more. I am a non smoker have lung cancer. Roy Castles targeted therapies booklet is worth reading too x
Thank you Bow-19. I hope your treatment journey is going well.
I have asked for further explanation from the cancer team regarding choice of Erlotinib vs Tagrisso, I am sure the Oncologist is doing his best for dad but it helps us to have a full understanding and also asked for the mutation type of EFGR. Also looking at the various creams available as the rash from these drugs seems a certainty. Dads CT scan was in May, starting on ( probably) Erlotinib even next week, seems a long time since diagnosis and all the time you think the cancer is growing. The EGFR sources -are very helpful, asked if I could join their forum.
My journey is going well thanks, although it has a been an up and down one! I hope you find the EGFR group useful. Hope your Dad responds well to his treatment too. I have a Lung Cancer Nurse who I find very helpful and useful to have as a contact. Wishing your Dad all the best x
It can be quite hard to navigate all the information - EGFR+ UK charity and Facebook group should be able to offer more detail in addition to that provided by Roy Castle lung cancer foundation. Treatments can be chosen due to patient's own health/clinical situation so that may also be a factor - if a treatment is available on the NHS and recommended, the clinician will not be making decisions based on cost contrary to popular myth/belief but what is most pertinent to the clinical need and fit.
side effects listed are usually the complete list of those known from clinical trials and those reported via yellow card scheme when patients are on them outside of trials but not everyone gets all or even some of them. Many do well on targeted treatments and they have been a real game-changer for those with the relevant mutations in their tumours for which such treatments are available or being trialled. good luck.
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