Mesothelioma

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

Immune therapy

Leepy17
Posted by

My dad was diagnosed with mesothelioma in July last year. He had one cycle of chemo via the Mars2 trial and it kept it at bay till recently. He stopped chemo in Nov last year and was monitored via x-ray every 6 weeks since. The most recent x-ray showed the shadow had grown so he had a CT. The tumour had gone from 2mm to 7mm. He now has to start more treatment. A new cocktail of chemo or another option we have is immune therapy privately. Has anyone been involved in immune therapy and if so how have they got on? 
Many thanks

hurtandconfused981
Posted by

Hi Leepy17,

Sorry to hear your dad's tumours have grown a bit.

Private immunotherapy is very, very expensive. Have your oncologists referred you to any trials? There are a couple of immunotherapy trials that your Dad could participate in. 

The mesothelioma UK website usually has some up to date information in a PDF on their website:

https://www.mesothelioma.uk.com/information-support/information/clinical-trials/

It may be worth pursuing this as an option or asking your oncologist about it.

Leepy17
Posted by

Many thanks for getting in touch. His oncologist has suggested a trial called ‘confirm’ but this is with the drug / placebo. Dad is in a position to have the immune drug through a claim he made via the employer’s insurance company. They will cover costs of treatment etc, so we feel rather than take the risk with the possible placebo we would go direct and have immune drug privately. 
We’ve actually met with the oncologist today who would organise the immune therapy privately. He is also the consultant leading on the trial so was able to give us some insight. However, he did say the sample on trial is very small and results are no way conclusive at the moment. 
I think we are leaning towards the immune treatment rather than the second line chemo vinorelbine because supposedly there are less general side effects (although there can be significant side effects with immune therapy if it doesn’t agree with you), he can have the treatment at home and it is every 3 weeks compared to every week. He’s healthy enough and vinorelbine would still be an option if the immune therapy didn’t work.
Any thoughts, feedback or personal experience with either treatment would be gratefully received. 
Happy to keep everyone posted with the progress. 

hurtandconfused981
Posted by

Hi Leepy17,

This is all great news and I'm glad you managed to get the immunotherapy covered via claim to the insurance company!

A few people on here have mentioned the CONFIRM trial on and off (this is the one in Southampton, yes?). There's another one in Leicester that sounded promising but I can't recall the name of it now - that one does not involve a placebo. For sure it's on the meso website I mentioned before.

I think immunotherapy is a good route forward for this cancer from my own reading/research.... But unfortunately I can't offer any personal experience as of yet because we are not at the "treatment" stage as Dad's cancer seems to have "fallen asleep" for now.

There's definitely others on here that can help so I hope they read your message soon :). I just didn't want to leave without responding.

Leepy17
Posted by

The confirm trial was offered in York/Harrogate but I believe there are other places who offer it.

Great news for your dad with regards it having ‘fallen asleep’. Long may it last. 

Thank you so much for replying. 

All the very best of luck to your dad.