Intersitial Lung Disease and Lung Cancer

[Clairebrocks]

Dear All,

My father has stage 3B Lung Cancer which he was diagnosed just over 18 months ago now.

He also has intersitial lung disease (which he didnt realise before treatment) so is limited to treatments. He did have 4 rounds of chemotherapy August to October 2022, and did have a fair amount of shrinkage on his main tumour.

I am just trying to find out more about intersitial lung disease and lung cancer to see if there are further treatments available. He is 87 now but still manages to walk 3/4 of a mile around the park every day as he was very fit before his diagnosis.

We have been told he cannot have radiotherapy or immunotherapy because of intersitial lung disease and was wondering if anyone on these threads had any further information on treatments for ILD and Lung Cancer.

So far I am not having any luck in finding any alternative treatments.

I have asked various hospitals about second opinions, but some rule out that, because of the ILD.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Clairebrocks

Sorry to hear about your dad and how difficult this must be for you all. Many lung cancer treatments can exacerbate Interstitial lung disease and therefore are contraindicated in the licensing guidelines.

You could ask about clinical trials, but you may find that having the Interstitial lung disease will be an exclusion. I can appreciate this must be quite challenging and stressful for you both. You could still enquire about a second opinion, even for your peace of mind that you have tried all routes.

You may wish to contact Oxford University research team, although this is for interstitial lung disease and not lung cancer, they have a few experts on ILD on the team: ouh.nhs.uk/services/departm...

You are welcome to contact us if you would like to discuss anything, you can email ask the nurse at [e-mail] or call our free phone nurse led helpline on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Take good care of yourself.

The Roy Castle Support Team

[Clairebrocks in reply to RoyCastleHelpline]

Thank you. This is helpful information as so hard to get any information in respect of ILD and lung cancer. I will certainly contact the Oxford University research team, to see if the experts on the team, are aware of anything further that could help. You are right in that we come up against a brickwall for any kind of trials as my dad also had intersitial lung disease. We have asked about a second opinion but most doctors dont always want to see him in respect of trials once you mention he also has ILD.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to Clairebrocks]

This must be extremely frustrating for you and we do wish your dad all the very best. Take good care of yourself.

The Roy Castle Support Team

[JanetteR57]

Sorry to learn about your dad's conditions - sounds as if he is active and fit despite these diagnoses. The European lung foundation (based in Sheffield) has good information and patient support groups for ILD. Patient representative members from each of their groups come together regularly to look at aspects that 'cut across' different lung conditions (I'm on its lung cancer patient advisory group). This information may help but as explained in the response from RoyCastle lung cancer foundation, those with other conditions (not only respiratory ones) can sometimes find some treatments and trials inaccessible.

Some find that lifestyle changes can also improve general health and wellbeing. I found the book 'anticancer a new way of life' by Dr Servan Schreiber particularly good in that regard as he advocates a more rounded life - looking at aspects like keeping active, regular sleep, keeping hydrated, social contacts, improved diet alongside treatment can all help. It sounds as if he's well motivated to keeping active so fingers crossed the shrinkage/management of his tumour continues well. good luck to you both.

europeanlung.org/en/informa...

[Clairebrocks in reply to JanetteR57]

Hi Janette,

Dad is very fit generally (or was). I think chemo and cancer at his age takes that away from you but he still keeps as active as possible. Even though he gets a lot tireder. Thank you for the recommendation of the book. I have ordered that today so will have a good read through. I will also contact the organisation in Sheffield to see if they can offer any further advice.

Thank you