My dad has been diagnosed with Mesothelioma

I’ve had chemo three times, do read my profile.  I don’t have experience of fluid, though plenty of others do.  

In 2009 onward I had 4 years of chemo 4x6 each session It gave me shrinkage every time. But then 2014 Immunotherapy came in a 2 year trial helped me to stay alive to this day. Good Luck to your  Dad xx 

Hi, 

sorry to hear of your diagnosis and I wish you all the best for the future. It’s really good to hear that the treatment is working well for you. In regards to immunotherapy, is this better than chemo or does it depend on the person? My dad was meant to have treatment at the royal Marsden, however, due to a nose bleed caused by the cancer he now cannot have it and is having chemo at a different hospital. I am not sure what the treatment was at the royal marsden, I think he doesn’t say too much as he worries it will upset me. 

i also found out they estimated how long he had left, however, he didn’t want to know. I feel like I need to be positive as there is new treatments come out and they cannot always estimate everything correctly. 

Thank you, I feel worried for him. Good luck with all your treatment and it gives me a lot of hope as I can see from speaking it does work. xx 

Hi, 

I read your profile and it’s amazing the treatment you have had. I’m sorry to hear of your diagnosis and I wish you all the best in the future. It’s really good to know that the treatment does work and makes me feel more positive. 

How do feel after the chemo? I know everyone is different. My dad starts his chemo next week and i don’t really know what to expect. How often is the chemo? I don’t think my dad really knows and when I ask I don’t think he wants to tell me because I get upset. 

You have either 4 or 6 sessions and that produces first stable then shrinkage. I suffer with numbed soles of my feet as the nerves are damaged and I fell over a lot so I walk with a stick but its a small price to pay as it gave me back my life. Then Immunotherapy came in 2014 and that extended my life to now 13 years. Good luck to dad <3

Thank you for reaching out and explaining the chemo to me. It is truly amazing the treatment that you have had and gives me a lot of hope. I am sorry to hear you suffer with numbed soles of your feet, however, it’s really good the treatment gave you your life back. Good luck and all the best. 

They can only tell you averages of how long you survive and they dont say, as they should, that with treatment you can survey longer. They gave me 3 months but they didnt know how positive I was and that I would go in for every trial possible. The Royal Marsden has Phase 1 Trials only in their drug development Ward. They get small trials from drug companies so they dont advertise them. 

Yes I see what you mean that they can only give an average. That’s amazing how all the treatment has helped you and you have survived much longer then what they said. It’s also shocking they said to you 3 months, it must have been awful to hear that too. I don’t know what they said to my dad, he didn’t want to know. However, I guess it may be better, as it will worry him. How do you find out about these trials is it through the hospitals? He starts chemo tomorrow he went for blood tests today, his first session is from 2.30-5. Did your session last that long too? Thank you, hearing your story makes me feel a lot more positive for my dad and it’s amazing what they can do. Good luck with all your treatment. 

Im researching all the time for trials I attend conferences etc. Yes its a long day when having chemo as they use a lot of fluid to make it safer to enter the chemo into your veins. He will be coming home in the dark at the moment so he will probably go straight to bed. Bless him I wish him luck x

Thank you. He just got back about 1 hour ago from his first chemo. I’m shocked because at the moment he looks fine. I guess he could get effects from it later, but hopefully not. That’s good to hear that there are trials around and it sounds like they bring out new medicines quite a bit. Do you have to have treatment every year? I saw on your profile you was diagnosed with this years ago, so was interested if treatment is ongoing?