Hi,

I’m not sure what type it is. I have gone to the appointments but it is very hard to ask questions because I don’t really know how much my Dad wants to know.

I know it is aggressive and too far gone for operation but he has been offered a trial in London. It is chemo alongside a new drug called ADI-PEG 20. Look it up, there is loads of info.

the only trouble is it’s in London and a I really don’t think Dad is strong enough to go up every week. I am taking him up on Weds but this weekend has not been good and he is now coughing up a little blood. I don’t think he’ll be accepted.

His symptoms are breathlessness, extreme tiredness, he sleeps a lot in the day. He has pain on his left side because it has gone a little into his rib. I also think his mental state is making things worse.

He is a nightmare because he won’t take any paracetamol because he hates taking medication.

How is your Dad dealing with it? Do you know prognosis?

Thank you for your advice. My Dad is also not one to show his emotions so to see him cry is really difficult and I also try not to cry in front of him but it is so hard.

I find some days are better than others but other days, I just start crying for no reason.

So unfair. I am sorry for the pain you have gone through. Thanks for the support.

Hi,

Don’t apologise for the long post. It’s weird but it has really helped writing it all down to a total stranger!

Feel free to vent anytime.

We have also spoken about immunotherapy and they have also said that he can’t have it until after he’s had chemo. But there is an immunotherapy trial in London because they mentioned it to my Dad.

I really do understand completely how you feel. It’s such a desperate situation I know. All we can do is be there for our Dad.

Do you have anyone to support you?

Hi,

My Dad also struggles to sleep, sometimes due to pain, sometimes due to things going round his head.

It does seem that they are caught between a rock and a hard place - if they have chemo, it makes them sick but if they don’t have it, the Mesothelioma will make them sick. It really is a rubbish situation.

I think you can sign yourself up to trials - have a look on this site. In my Dad’s case, we just had a nurse in on the appointment with the oncologist and she told us all about the trials.

My Dad went up to London on Friday and he was also told about an immunotherapy trial that is happening up there but again, he can’t start that one until he’s had chemo first.

Privately, immunotherapy cost about £8,000 a shot.

Have you looked into compensation for him? He will get some from the government and industrial injury benefit too. Then there is the chance of compensation from his place of work if he knows he was working with asbestos.

Hello 

How are you doing and how is your dad? When we saw oncologist she said that there is no trials for him but I will ask again. As well as I said I want a second opinion . And did you say you signed up to trials yourself ? This trial that your dad went to isit a new drug sort of like chemo? Sorry for so many question. My dad been feeling sick it started yesterday and today hardly ate anything. They gave him anti sickness medicine I really hope that helps as well as sleeping tablets to help him sleep. Is your dad taking any ? 

As for asbestos his been working back in our country (originally Lithuania) so I dont think they could something but I will most likely have a look.how about your dad? 

It's a horrible situation to be in as much for family but for our dads it's so much worse but you know we have to have hope and believe in miracles they happen every day

Xoxo

Hi 

I have sent you a friend request so we can chat privately. I tried to tell you on this forum who we are dealing with and where but they wouldn’t post it as you are not allowed to mention names.

If you accept my request, I will give you details.

We didn’t sign Dad up to the trials. When he had his first visit with the oncologist, there was a nurse in the room who deals with trials and she told us about it.

Maybe your Dad’s cancer is not suitable I don’t know but I will let you know the details via private message and you can look into it.

Dad is now coughing up blood but I think he may have a cold. I just hope he is well enough for me to get him to London on Wednesday. I’m really not looking forward to it.

Sorry but is Dad actually having chemo yet? 

Hello I've accepted your request and sent you a private message

Hi again,

Just thought I would mention that if you need some more information and guidance (including about the industrial payments available to Mesothelioma sufferers) there is an organisation called HASAG (they have a website) who helped us through the process and were very helpful during such a stressful and difficult journey.

Having others to talk to on this forum helped me a great deal and  I vented my frustrations many a time to kind listening ears, picking up many hints and tips along the way when I felt so lost.

Virtual hugs to all those going through this.  Jules

Sorry about your dad. I am also looking for any infrmation i can get since there is really no treatment; i came across several of your posts. My partner's dad was also diagnosed with pleural mesothelioma. it is a difficult thing to observe and go through. The oncologist suggested a study for him called "infinite mesothelioma study" pls have you heard about this? is your dad on clinical trials and if so how has been is experience.

pls would apreciate any help from anyone.