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The Roy Castle Lung Cancer Foundation
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Treatment withdrawn, do we have any more options?

Hi all

I’m writing this out of desperation and am probably clutching at straws. I would like some advice on whether there is any more I should / could be doing to help my Dad or just accept that there is nothing more that can be done.

He was diagnosed with stage IV lung cancer in May 2018. It had spread to his lymph nodes and abdomen. He was given chemo and radiotherapy to help keep it under control. Until about 2 weeks ago he was doing really well and still working. However he has deteriorated quite rapidly in the past 2 weeks and the latest scan confirmed it had spread further. The consultant has said that he can’t have any more treatment as he isn’t strong enough and it could make him worse.

He was previously told if he relapsed they would look into immunotherapy for him but this now doesn’t seem to be an option.

My question is, should we push for further treatment or accept what we are being told and just make my fathers last days as comfortable as possible? I know I should trust the experts and I’m sure they are right but i had hoped immunotherapy could have been an option. He is only 62 which is why I’m finding it so hard to accept.

Any advice would be greatly appreciated.

11 Replies
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Hi,

I am so sorry to hear your sad news.

My mum was diagnosed with Stage IV July 18. She sadly passed away September 18.

Sometimes you just have to except that this awful, ruthless disease has won.

I wasted so much energy fighting on her behalf in those couple of months. Although I obviously didn’t realise how quickly the end would come.

Spend time with your Dad. Tell him you love him. Hang on to every word he says because when my mum told me for the last time she loved me I didn’t realise it would be the last time. This time for you now is very very precious.

Put your energy into your dad just now, later on you will need it just to get through every day.

Cry, laugh, reminisce.

These last few days or weeks will be tough but you can do it for your Dad.

Be strong.

Take care,

Sonia

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So sorry...

I obviously don't know all your dad's details but I know people who are really poorly and have gone on a trial...

For some it can help but obviously not for all ..

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Hello sorry to read that you are going through this.

I think further treatment options will depend on how your dad is overall - I think it is called “performance status” or something similar which basically means how well the patient is able to function and care for themselves. If someone is too ill even to get out of bed they won’t continue with any treatment and will be looking to control pain and other symptoms.

I was in a similar situation with my mum about a year and a half ago. We were told that the chemo was actually making her more ill and not giving any improvement and so it would be stopped (this news was delivered by a junior doctor whilst she was an inpatient in hospital for pneumonia) we were devastated. However the oncology consultant explained that the growth in her tumours was very slight. He gave her a break of a couple of weeks and then started immunotherapy. The immunotherapy does have some side effects but it isn’t as harsh as the chemotherapy.

You have nothing to lose by asking about immunotherapy or even a clinical trial!

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Is your Dad treated at a specialist centre? Maybe you could get a second opinion and also ask about the Clinical trials that are available. Also maybe discuss with the Roy Castle Helpline for ideas.

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Dear Apple321

So sorry to hear of your Dads progression and how difficult it must be for you all. It is understandable your conflict on what is the best decision, but as you know may depend on how your Dad feels, either physically or emotionally able to pursue any treatment, balanced against the need to maintain as best a quality of life as possible.

It sounds like you have a beautiful relationship with your Dad and something you have both perhaps discussed, which may help in what direction to go.

Immunotherapy is dependent on the correct cell mutation being present. Perhaps discuss with your GP or lung cancer specialist nurse.

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

Kind regards

The Roy Castle Support Team

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I am sorry to hear your story. We all have different circumstances and different experiences. I have been luckier. I was diagnosed with stage IV NSCLC in Sep 2016. I was told no curative treatment was available, but I could try palliative chemo to extend “the median post diagnosis life expectancy of 6 moths”. I did 6 sessions that made some improvement. Then no treatment for 9 months, before a worsening of the tumour allowed the Oncologist to authorise immunotherapy. My overall good “performance level” supported my case. 25 sessions of immunotherapy later over the last 15 months and I am stable, but not cured. Some side effects, but manageable. More sessions still to come, and I view my condition as long term chronic rather than terminal.

I know I am lucky, but all individuals and all stories are different.

I do hope that things work out for you. God bless.

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Here in the States I heard Dr Carbone from Uni Ohio Med Center talk about giving a patient with a low performance score Tarceva and having an amazing enduring response. It’s worth it to ask as Tarceva will work in 10% of patients who test negative for EGFR.

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Not sure if your Dad had an original Biomarker testing? How did they determine that Immunotherapy wasn't an option. Did they do the bio marker testing or better a complete NGS panel to determine additional options or at least confirm if Immunotherapy isn't one. It might help to contact an dependent tumor board (844) 627-7246 called Massive BIO located in NY ( massivebio.com/

). they offer virtual consultation within days or may be less than 2 weeks. They also match you for free with applicable clinical trials. Please don't give-up. It is good to believe in your doctors but it is your life and you must be your own advocate...Get second opinion ASAP. Hugs and Best of Health to your Dad. Basha

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Hello all, thank you for all of your replies. Sorry I am only just responding, unfortunately my Dad passed away at the weekend.

He deteriorated so fast in the end, it was a shock as we thought we had longer with him but the cancer had spread to his liver so his liver was compromised.

We are heartbroken as up until a few weeks ago he was still working and we were hopeful that even if he deteriorated the immunotherapy was our back up as the consultant had said that if he relapses she would arrange immunotherapy so he was eligible for it.

I will now always wonder if he had had a scan sooner and started immunotherapy whilst he was still well enough he could still be here today. I am frustrated that he wasn’t monitored more closely but the outcome may have still been the same, we’ll just never know.

I wish everyone all the best on here and hope you have better outcomes for yourselves and loved ones.

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I am saddened by your loss. You and your family are in my thoughts and prayers. God bless you with health and peace. Keep living and enjoy your family and friends to the fullest. Basha

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With hindsight , which is a wonderful thing , I wish we had stopped treatment for my husband and enjoyed some of the “ quality “ time that everyone talks about . My husband was diagnosed in 2012 and had a variety of treatments but when he started to decline we would have been better to accept the inevitable and concentrated on his comfort . My husband died on Wednesday.. Sending love x

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