Dad Treatment Options

Hi and welcome to the online community

I'm very sorry to read that your dad has recently been diagnosed with mesothelioma and that you don't know which way to turn.

Treatment varies depending on whether your dad has pleural or peritoneal mesothelioma and your dad will have a number of things to consider when he is about to make a decision about treatment. He needs to think about the possible benefits and disadvantages of treatment to help him make the right decision for him.

Your dad's MDT (multidisciplinary team) will have used national treatment guidelines to plan the most suitable treatment for him but he could ask for a second opinion if he is unsure about his treatment options. 

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My mother has been stable over 1 year with nivolumab .

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Hi HoneyMonster,

Firstly let me say I'm so sorry about your dad's diagnosis.  Your dad's experience sounds very like my Dad's experience.  I went in to his first oncologist appointment armed with a set of questions about his Mesothelioma, to say the oncologist was surprised is an understatement and very few of the queries were answered.  There are no oncologists or specialist nurses in Northern Ireland and so I have done much of the research myself.

Dad was diagnosed in March 2019 and had a few very rough months due to fluid on the lung, chest drains and an infection.  In May 2019 he had the chest drains removed and we were able to travel to London to privately see an Oncologist who was a specialist in Mesolthelioma and although that didn't change the fact that he had a terminal disease, it really had such a significant impact for my dad - who came away with Hope rather than dispair.

Chemotherapy was the first stage in his journey - he had a combination of Cisplatin and pemetrexed - which he tolerated pretty well all things considered.  It was not a walk in the park, but he was able to function throughout his treatment and didn't stop eating or lose any weight.

His cancer remained stable until March 2020 - right at the start of the pandemic - we were told to wait and see what the next scan in June 2020 showed - which again showed slow growth.  At that point I had investigated and started the process of looking at getting immunotherapy treatment - which was difficult in Northern Ireland - and due to the pandemic - we couldn't really travel.  We had just spoken to a consultant willing to start the process when, through Twitter forums I seen that NHS England were offereing immunotherapy treatment as an alternative to chemotherapy for Mesothelioms patients as it was a safer option due to Covid (If a sample of the patients biopsy showed positive for PD1 protein).  Long story short he started treatment in Oct 2020 - but unfortunately we just found out yesterday that the treatment hasnt worked for him.

But we aren't giving up and are currently looking at clinical trials.  My dad is the type of person who needs to know that he is fighting this disease and apart from it, he is in pretty good health.  Weird to say, but true.

He was given a 12 month prognosis, with treatment, in March 2019 at that first appointment - We are in March 2021 and although we didn't hear the news we wished for yesterday - My dad is working (he has his own business) and walking every day - apart from some breathlessness when he extends himself, and the odd nerve pain - you wouldn't know he ha this illness.  I hope this gives your dad some comfort and hope.

We had to do all our own research and fight for treatment options - the appointment we had with the specialist was so important and the best money dad has spent, as he came out with the hope that due to his underlying health, he would be able to be here longer than that 12 month period he initally was given.

Please let me know if you have any questions or want to chat 

Hi matw,

That's fantastic

Great!

How are things?