Shock diagnosis and rapid decline

Hi  and a warm welcome to the online community

I'm very sorry to read about your dad and I know what a difficult time this will be for the whole family.

I don't have any personal experience with mesothelioma but I noticed that your post hadn't had any response yet. By replying to you it will 'bump' it back to the top of the discussion list where hopefully it'll be seen by someone with the experience you need.

I have found this information about mesothelioma from Macmillan for you to have a look through which I hope you'll find helpful.

If you don't get any replies you could post your questions in the ask a nurse section of the online community and one of the specialist nurses will respond within 3 working days. If this is something that you'd like to do clicking on the link I've created will take you straight there.

x

Hi Kate,

My dad was diagnosed in March 2019 - due to fluid on his left lung.  He thought he had a chest infection until he had an xray - then the CT Scan appointment came for 2 weeks after that - so he ended up going to A&E to site for a full day until he was scanned and they realised his whole left lung was covered in Fluid.  Dad was 68 and had no underlying conditions though.

He ended up with a PluerX drain in, and they also couldn't do the talc procedure to try and glue the linings together.  They took litres off him in that first week in hospital prior to the biopsy and drain fitted.

His fluid did slow down, however he ended up with an infection in the fluid and the lung - which resulted in an additional pigtail drain being put in his back (as there was no bed in the hoispital he needed to be in).  The infection very nearly wiped him out - though he was lucky to have caught it early and he finally recovered.  On the plus side - the infection cleared up the fluid and he was able to get both drains out a month later.

He was able to start his first chemotherapy treatment in June 2019 - Ciplation and Pemetrexed - which held him stable until March 2020.  Though he tried Immunotherapy, this did not work for him, and now he is nearly finished a 12 week case of Venorelbine (which seems to be doing something).

This is such an unrepdictable and awful disease.  When first diagnosed - our oncologist told him he would have 12 months even with treatment!  We did go to a specialist in London - who was much better informed about this disease and was able to give us a better understanding though.

He is still here and fighting - so don't lose hope.  Message me anytime if you need a chat