Options / hope

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Hi all, would really appreciate any thoughts , insight or experiences.

My grandad was diagnosed with stage 4 lung cancer June 2023, he is 77 but prior to diagnosis was very fit and well, performance status zero. His treatment plan was to have Cisplatin and Pemetrexed (chemotherapy) and Pembrolizumab (Immunotherapy).

He tolerated a number of cycles but then got a couple of infections at once and was very poorly. Upon discharge from hospital he was told they would reduce the strength of the chemotherapy to see if he could tolerate this better. However, at his appointment they said they had stopped the chemotherapy and said he could only have immunology.

CT scan in September 2023 - disease was stable

CT scan in December 2023 - disease had responded to treatment

Within the last few weeks he has appeared more fatigued but has also been doing more such as going out all day etc, which he could not do on chemo.

CT scan on the 27th March 2024, I requested the report and it states increase in size and number of lung nodules, subtle emphysematous changes and there is evidence of steady but definite disease progression.

We are waiting to see the consultant in 2 weeks time. We are scared they will pull treatment options altogether or be less likely to support due to his age, as we have had none stop comments like "at least he has had a good life and nearly 80".

I would appreciate any advice / support on other treatment options, what has worked for others or any other places we could get a second opinion or look into anything else?

  • Hi   I am sorry to hear about your grandfather. It would be impossible for any of us to comment about his treatment, and the possibility that the consultant may stop it due to disease progression. I really do not think that treatment would be stopped due to age, it will only be stopped if they think it is not working anymore, or if the persons health is too poor to continue. I am sorry you have had people make such inappropriate comments about your grandfathers age, some people are so insensitive.

    If grandads treatment is stopped, and you feel that you want a 2nd opinion, then do ask the oncologist. This is quite a common thing, and something they are very used too. They can arrange for grandad to be seen by another oncologist and it is his right to ask for a 2nd opinion. 
    If the oncologist says that all treatments have been exhausted, then you can ask if there are any medical trials that may be available. There are certain criteria’s that need to be met to take part in trials, but this may be an option. 


    Good luck for the appointment. Please let us know how he gets on. 

    Chelle 

    Try to be a rainbow,in somebody else's cloud
    Maya Angelou

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  • My mate is 81 and has lung cancer confined to one lobe. They couldn’t operate due to emphysema making the lung walls thick.  He has been offered radiotherapy but it terrified . He would like to speak with someone who has experienced this.  He isn’t too poorly at the moment but his wife has had a stroke and is in hospital.  Any help would be much appreciated xxxx

  • Hi Sue.

    I'm glad your mate has you looking out for him.

    At 57, I'm younger than him, but found the radiotherapy to be not bad at all. I was pretty fatigued for quite a while, but I think some of that was down to many months of insomnia. It honestly didn't hurt and each treatment was pretty quick.

    He could ask to be physically walked around the treatment unit and have what will happen at each point explained so he knows a bit more what to expect and knows what the machinery etc looks like. There's also the stuff that isn't a big deal really, but can feel like it if you're not prepared - like not wearing clothes with metal zips etc and knowing it's perfectly fine to put a long coat on over your gown while you're waiting in the corridor, because it can be draughty and the gowns do nothing to preserve dignity! Also, if he's not too bendy and finds dressing and undressing a bit difficult, t-shirts and jumpers or cardigans with zips would be better than shirts with buttons etc. The staff are happy to help with getting gowns on in the changing room if help is needed.

    If he's dreadfully British and polite to medics out of respect, I'd say this is the time to speak up. I don't mean he should be rude or anything of course, but when he's asked if a position is comfortable, it's more than OK to speak up if it isn't and the radiologist will listen and help.

    As well as his own understandable fear of the unknown, I would imagine he is also concerned about how it may affect his ability to continue to support his wife as best as he can. I'd suggest he speaks with the radiotherapy team about his wife and asks for their help in managing his appointments as best they can allowing for emergencies to enable him to visit his wife soon before or after treatments to minimise his stress and anxiety as much as possible. Having a fairly regular routine might be comforting to him at such an uncertain time. The stroke ward sister could also potentially assist, but if there are two hospitals involved it could be challenging.

    Just knowing you're there muct be a huge comfort to him right now, My friends have been the most enormous support to me and will no doubt be again since the damn thing has now popped up somewhere else. They insisted on driving me to and from appointments because they know how much I hate being late - we all know how difficult it can be to find parking - and small things like that really help take some of the stress away.

    I suppose my shorter response could have been "what is it that's scaring him so much?" I would imagine that between us, we'll have collectively had the same fears, so he isn't alone in that sense.

  • Thankyou so very much.   I am seeing him tomorrow so will give him some of the information .    
    I doubt he would go on a forum so thought I could try helping this way x.    
    sending lots of love and gratitude