New Member - Dad diagnosed with Pleural Mesothelioma

Hi Nebbsy and welcome to the online community

I'm sorry to read that your dad has recently been diagnosed with pleural mesothelioma and know what a difficult time this will be for the whole family.

I hope that you'll find this group a great place to ask questions and share experiences and I hope you don't mind me suggesting that you also join the family and friends group where you can share your emotions and worries with others who have a loved one living with cancer. If this is something that you'd like to do just click on the link I've created and you can then join and post in the same way as you did here.

I hope your mum was able to include you in a Facetime meeting with the oncologist today and that some of your questions have now been answered.

Sending a supportive ((hug))

HI latchbrook, thank you for your reply and advice. I will join the group you suggested

How did your dad's meeting with his oncologist go? 

Not great. It's a rare form called Sarcomatoid Mesothelioma and stage 4. I didn't get many questions in as the call to me was delayed so I will hope to follow up with the CNS today. The typical prognosis is months if not treated but as a cancer it does not respond well to treatment. They're speaking about chemo but I have a few questions first before that is signed off. 

I'm investigating all that I can with additional treatments and perhaps getting a second opinion so that were in the best position. My other challenge is travel given i am based in Australia so navigating what that needs to look like

Sorry to hear that Nebbsy but you sound like you're doing all you can to make sure that your dad has the best chance possible.

x

Hi

Sorry to hear your dad’s diagnosis. We are in a similar place with my dad. His is biphasic and he is 83. 
He worsened suddenly and we were recommended not to go ahead with chemo as the response rate is poor for sacomatoid cells and side effects high. 
He has been put on steroids which have given him a boost and he is going to have radiotherapy for pain relief. 
We are looking in to private options for immunotherapy as it’s only available after chemo on the NHS. We’ve had telephone consultation with Dr Shah in Maidstone and Dr O’Brien at the Marsden and they recommend trying Nivolumab on its own as it’s more gentle.  
Hasag have been brilliant and have helped with getting financial support and compensation claims to pay for it all. 
This has all helped to give us hope and keep strong for my dad. I hope it helps you too. 
xx 

Thanks so much for your reply, that is really useful information. I only had a quick call with the Oncologist last week to learn of dads full diagnosis and treatment options. At this stage, Dad wants to go ahead with chemo in 2 weeks but I am researching Immunotherapy as best I can and understand it is only available as a treatment after chemo. I will look into the two Dr's you mention. I've yet to have a detailed discussion with Dr's about their view on chemo for Dad so expect to have that Monday.

We have our first call with Hasag this week also so good to hear they have helped you.  Thanks again.

Hi there, quick question if I may. I had a chat with the nurses today and discussed chemo versus Immunotherapy. Apparently, Dad is an ok candidate for chemo so they feel ok with him having it and then Immunotherapy if the chemo hasn't worked. I mentioned. having Immunotherapy as a first-line treatment but privately and the nurse seemed to think that isn't possible as it hasn't been approved yet. Have you found out any info on this yet?

When we went to Guys they said the same but for my dad’s mix of cells said that immunotherapy would have a much higher response rate. They referred us to our local hospital where we would have chemo as a first line treatment and then be able to access immunotherapy. Immunotherapy is no longer available as first line on the NHS. We were offered immunotherapy privately and they would also offer it privately at Guys but my dad didn’t feel well enough to travel there so we found the two other places I mentioned which are closer to home. We are working with Hasag who have obtained Attendance Allowance and Industrial Accident Benefit and some of that money arrived last week which will fund initial treatment/care. We have also appointed a solicitor who is applying for compensation. Sometimes a former employers insurance company will pay compensation and fund private treatment but that will take longer to organise. Hope this helps. Ali  

Thanks again, that's a great help. We have a call with Hasag today so will kick start all of those conversations. I also heard back from one of the Doctors you mentioned who gave me some additional info on Immunotherapy so I feel much more informed.