Hello everybody,
I am writing on behalf of my fiancée who’s dad has been diagnosed with sarcomatoid pleural mesothelioma. He is 65 and was in good health but we think the cancer was potentially quite advanced when they found it. He was taken into hospital for chest x rays over Christmas and then multiple biopsies. He was weak and breathless with low appetite throughout this but staying at home and fairly able to look after himself. However after the most recent surgical biopsy he took a real turn for the worse and we truly thought we had lost him - his calcium levels shot up, he was on full time oxygen fora a while and he was incredibly confused, delirious and frail. He is still in hospital two weeks later but has made quite an amazing turnaround after meds to improve the calcium - though he is very frail and exhausted and still not eating much, he is no longer attached to any tubes , no longer confused, back to himself mentally and desperate to get out of the hospital.
We are aiming to put together the necessary care at home so he can leave, thanks to some amazing friends in the NHS and a local hospice service. But we all feel very confused at how quickly things changed and then changed back again, and what this means for treatment options. The doctors seem to be very slow and not very clear on what his actual prognosis is, and whether he could get strong enough for chemo or (ideally?) immunotherapy.
I suppose I am just wondering if anyone else has had a similar experience of this sort of rollercoaster and how it panned out for you. There seem to be some good drugs that have become recently available on the NHS for meso - is he a candidate for these? What would affect the chances of this? Or do we need to accept that it is now end of life care only?
Hi Sennsuchtand welcome to this corner of the Community but sorry to see you finding us.
I don't have Mesothelioma but have lived with Asbestosis for a number of years, fortunately it remains stable but my main 23 year fight is with an incurable type of blood cancer Stage 4a
In the early days it’s all about understanding and once you get more information and talk with others the journey will get more understandable.
So let’s look for the group members to pick up on your post. There are a number of active group members at the moment so why not click on the main ‘Mesothelioma Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
Talking to people face to face can help a lot but during these strange times it’s not that available but do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as these folks are amazing.
The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. You may also find our Ask an Expert section helpful but do allow a few working days for a reply.
You may also want to check out Mesothelioma UK for some good information and have various support platforms.
Always around if you need further help or just want to talk.
