Mesothelioma

A place for people affected by mesothelioma to support one another, ask questions, and share their experiences.

My grandad has been diagnosed with terminal mesothelioma

mollyx
Posted by

My grandad has been diagnosed with terminal mesothelioma linked to asbestos. He is not having treatment as there was no definite answer of what the clinical trial would be. I’m really struggling with the fact that he does not have very long left as I can now see him deteriorating.

hurtandconfused981
Posted by

Hi mollyx,

Have they offered him chemo at all or given any indication of what stage the mesothelioma is at? Even without any clinical trial chemo is usually the first line of treatment.

There are a number of trials. I think one is in Southampton and the other is an immunotherapy trial in Leicester. There are some rules on how these work though or whether he will be eligible so it's best to read it carefully and seek the advice of your local hospital/oncologists/team.

This website is a great resource for more information about mesothelioma:

https://www.mesothelioma.uk.com/

I also recommend talking to your local asbestos charity in your area. They will help you and your family get set up with things you are entitled to such as industrial disablement benefit, attendance allowance, the lump sum off the government and how to pursue a legal case against his former employers.

It sounds like a lot but I wouldn't delay on this as the latter, especially, can take a while but the solicitor can also strike a deal with the insurance companies to pay for private treatment of immunotherapy (although this is not a certainty.)

Keep positive. It's a terrible disease but there is hope out there.

mollyx
Posted by

My grandad has refused any type of treatment due to his age and he didn’t want to be put through all of that. All I know is that the cancer is in the lining of his lungs so it’s untreatable.

hurtandconfused981
Posted by

Hi Molly,

Mesothelioma is an incurable cancer, yes. But there are some people that have lived for quite some time with it. I can understand why hearing he refused treatment might be hurtful (I'm assuming here I realise) but everyone makes their own choices in life and I said I would support my father no matter what choice he makes (he has opted for chemo when its needed and no surgery). That's all you can do and to make the most of what time you have. Keep positive and keep him smiling.

In mestohelioma, there is evidence to show that in most people chemotherapy doesn't help at all or extends life very minimally (our hospital said it gives up to 3 months extra) I've heard some stories where the chemo stabilises it for quite some time though. Cancer is individual and depends from person to person. Even if your grandad can get onto an immunotherapy trial these trials could still take their toll on his body. It would be something he would have to discuss with you as the family and also his care team.

That being said... there are two aspects to mesothelioma. Medical and legal. Definitely look up financial support for him. He is entitled to quite a bit of financial reimbursement because it's an asbestos related cancer.

mollyx
Posted by

Thank you for your help. It’s just hard because now I’m realising that he is getting worse, and it’s happening quickly 

hurtandconfused981
Posted by

Unfortunately once it takes hold it does happen very, very quickly. It's a really merciless disease. The best you can do is to help with the management of his symptoms, palliative care, and discussing any potential future trials that may be more helpful than chemo (and less intense on his body) with his doctors.

Please let us know how you get on and if you need anything else just let us know.

onthego
Posted by

Hello mollyx. I have read your posts and the replies and they are interesting. I do not know if this is any good for you or not. I am in the same position as your grandad. I was diagnosed in October last year. I am still here and fighting this cancer. I know it is a fight I cannot win but I will not give up easily. I hope grandad can take a POSITIVE attitude to this condition and do what ever he still can do not what he cannot do. believe me, it is not easy. I always tend to over do things and get very tired. Although I get told off by my family for doing so much, I have self satisfaction that I am still useful. I refused chemo which would not help me and do not regret it. I hope he is able to do more than watch that box in the corner. Do not let grandad see that you are struggling, That will not help him. 

 I hope this has helped you in some way, and feel free to contact me