Treatment stopped

[Adaughter]

We thought Erlotinib was working for my dad, his tumour had reduced significantly on October scan ( started on drug Aug 23) but Jan scan showed growth, cough back and has been getting steadily worse with weight down to 7 stone ,diarrhoea and debilitating fatigue. Although Oncologist thought a standard biopsy was originally too invasive for dad, one was done around 2.5 weeks ago. I was hoping to see the EGFR-T790M mutation but Oncologist said initial findings found no mutation but awaiting the full report, however he didn’t feel dad could tolerate any more treatment and gave dad around 2 months to live. Dad is 89 but was the fittest , healthiest 88 year old you could have met before his diagnosis early in 2023. They have prescribed some steroids to help the fatigue and loss of appetite. I feel numb, broke down when the Oncologist gave prognosis. When the NHS originally said months, I said I felt like they we’re writing dad off due to his and following my research, said we were arranging private liquid biopsy, NHS then agreed to do the liquid one and the result was the targeted therapy. The Oncologist told dad to now stop taking the Erlotinib as it wasn’t working any longer. I feel utterly helpless and for the first time, defeated. I can’t believe my dads prognosis, I don’t know what to do.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Adaughter

This is understandably devastating for you, especially when your dad has been so well up until his diagnosis. It is often the persons symptoms and current health that signifies if they are able to tolerate treatment, despite their age. At the moment, the doctors focus will be on managing your dads symptoms and quality of life, and that is something you can ensure, in your own way and whatever your dad wants.

It is quite confronting to be given the prognosis and your dad may be too tired to even consider any potential treatment options. Equally, it is such an emotional challenge and distress for the loved ones, and hope you have plenty support for yourself and your dad.

It sounds like you are a wonderful and caring daughter and although no one knows how much time they really have, continue to use your time well , which includes you taking care of yourself as well as having time with your dad.

You may find this link for carers from Macmillan useful: macmillan.org.uk/cancer-inf...

We have a weekly carer support group online through zoom, and you can register through this link: roycastle.org/help-and-supp... alternatively you can email our coordinator [e-mail]

You are very welcome to contact us if you would like to chat, our free phone nurse led helpline number is 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, or you can email us at [e-mail]

Kindest regards

The Roy Castle Support Team

[JanetteR57]

so tough to watched loved ones deteriorate or appear to be 'written off' but clinicians have to base their advice/decisions on the state of the patient at the time sadly rather than how they may have been previously. I found that to my detriment when hospitalised in October when I was really poorly, nothing like my usual active self, hardly able to speak for coughing/breathlessness but I was simply treated based on my chronological age and assumed that I was always like that rather than an active working member of society.

Your dad may also have infection adding to his symptoms and steroids can really help a patient feel better (although come with side effects) and perk up appetite. I was on them for 5 weeks and another short course recently.

He should still be eligible for supportive care to help relieve his symptoms so do ask what can be offered for him.

Many people are given a suggested prognosis/timeline yet outlive that and defy the odds whereas others don't. My friend's mum was hospitalised some years ago with pneumonia and the doctor told my friend that he believed her mum had lung cancer as well but was unlikely to be strong enough to survive the pneumonia. She asked whether the doctor planned to tell her mum and he said not unless she asked directly as he felt that some people take the information and simply give up and deteriorate and he felt she might do that. My friend told her dad and brothers who asked another doctor who said the only way to tell if their mum had lung cancer was to do a bronchoscopy which they had done and sadly she died. They then had the ordeal of an inquest to determine whether the procedure had accelerated her death on top of the grief of losing her.... what happened still troubles her.

Be there for him, say what you need to, let him know what he means and has meant to you even if directly is too much, retell fond memories of happier times that you treasure. Be sure to make some time for you and have some support as if we're in pieces, we not always in the best frame of mind to be the support they might need.

Hoping he picks up once on steroids and that you can share some time together. Thinking of you both.

[Adaughter in reply to JanetteR57]

Thank you for your reply. I hope you are doing ok. My lovely dad, I can’t bear to think of him not being here.

We had actually paid for a liquid biopsy, again to check for mutations but the sample had some issue with clotting so only today was another one taken, it seems pointless now but dad wanted to see the process through. He said he’s not in any pain with the coughing but his appetite is not what it was and he takes 2 naps during the day as gets exhausted. Also has the annoying post nasal drip. Can’t write anymore, it’s all just horrible. Sorry.

[JanetteR57]

His coughing likely exhausting him and steroids interfere with sleep so don't worry if he takes naps during the day, it's the body's way of recovering. If your dad wanted to see the process through, then keep with that - he clearly wants to know more or have a better chance rather than it being pointless. It may throw up something new - hang onto hope. it's good he's not in pain and hopefully the steroids will improve his appetite.

It's tough when coughing or breathless to fit in eating as a priority and taste can also be affected so we can be off our food yet facing a large meal can be overwhelming especially when well meaning relatives keep on about it!

This information about eating well and offering small more frequent food - or liquid food like nourishing soups, shakes, smoothies, greek yoghurt or similar easy to swallow items can be more beneficial than just lots of empty calories with few nutrients.

hope he perks up and you get some answers soon... thinking of you both.

roycastle.org/about-lung-ca...

[Adaughter in reply to JanetteR57]

Thank you JanetteR57, yesterday Dad was more chatty and he ate more than me at lunch! If the steroids give him a boost, I wonder if when we get the results of both standard and liquid biopsy, another targeted drug could be prescribed? Funny enough dad was due to see Oncologist face to face on 11 March and he had a letter yesterday saying’ due to unforeseen circumstances’ it’s been rearranged to a telephone call on the 12th; the cynic in me wonders if the Oncologist has given his 2 month prognosis so no point in seeing dad. My research throws up other potential targeted drugs, dependent on results of biopsies, we could buy the drug the Oncologist recommends but won’t prescribe due to prognosis, my dad deserves a chance.

[JanetteR57]

sounds encouraging. I'd not read anything into the change of appointment - most Trusts are currently really under pressure with strikes, sickness and vacancies so things get moved - nobody reads things into prognosis or things as many won't even look at the records until the day of the clinic. Our minds go into overdrive at such times - too quick an appointment must be bad news, delays in appointments must be bad news, you get the picture....

If your dad is fit enough to withstand treatment and there is a treatment available then that is what the clinical pathway recommends. Many believe that going private will enable all sorts of things but often cancer care is better in the NHS and many of the clinicians are the same as in the NHS. Nobody is writing off your dad yet so for now, hang onto that date for the clinic and hopefully your dad will have prepared some questions about any possible treatments - there are clinical trials available in some places and not everyone has targetable mutations for which treatments are available. Research showed that giving them to those without the mutations proved harmful on clinical trials with earlier deaths than standard treatment which is why biopsies are so important. Many do ok on standard treatments or combination treatments and there are always treatments to palliate/relieve symptoms and the majority of UK patients are not diagnosed when treatment is curative i.e. they are advanced yet there might be something suitable. When I first became involved in lung cancer research, they used to hold back the 'best' treatment of targeted therapy or immunotherapy until chemotherapy and/or radiotherapy hadn't been effective whereas in recent years they've tended to use the most appropriate treatment first, leaving the more traditional approaches to fallback on. You can always ask for a second opinion too. As long as he's here and not giving up, there is always hope. good luck.

roycastle.org/about-lung-ca...

[Adaughter in reply to JanetteR57]

Hi, wondering about people’s experience with immunotherapy in similar cases i.e where Erlotinib has stopped being effective?

Thank you.