Pleural mesothelioma

Thank you so much for your kindness.  My dad was given 6-9 months survival as he had the fastest growing form of mesothelioma,  he's at 10 months now. His breathing is slow and shallow now but he's really settled and appears comfortable. His breathing was at its worst in December. His left lung was filling with fluid daily. He had to get a permanent drain fitted and the district nurses came in 3 times a week to drain 500mls out of it. This improved his breathing and his cough cleared. After a few months the drain slowed down and he got it out in May. It really gave him a quality of life for a few months before that the only relief he got between clinic visits to have it drained was to lie down in bed. He's on a settled dose of morphine and no complaints of pain at the moment. My dad was almost 16 Stone this time last year. Now he's like a skeleton lying in the bed.  It's just dealing with the symptoms as they arise. There is great support out there so make sure you ask for it. A colleagues dad had it also and he was on oxygen for a couple of months before he passed but that's not been my experience. Just take it as it comes. Being there is the most important thing for your dad xx

Hi Blue, so sorry to hear about your dad. Mine was diagnosed on 1/12/22 age 73. He has his lung drained, permanent drain and had 2.5 courses ipi/nivo before having a lot of problems - confusion being the main one, caused by low sodium. He was admitted to hospital mid May and came home briefly then in again and out a few times over the last 6 weeks. Hydrocortisone seems to be doing the trick for low cortisol and sodium but he now has stomach ascites and doesn’t want it drained. He has been told he has 2-3 weeks if he doesn’t have it drained and it breaks my heart 

The low sodium is exactly what happened to my dad then a week later he had neutropenic sepsis and had to be given very high intravenous steroids which has now made him diabetic type 2 he too has to take steroids and thyroxine but at the moment no problem with the lung do you think that will just suddenly happen. It’s been so awful my mum died of lung cancer 6 months ago had the most horrible death I just can’t bare to go through it again . I does help me to know other people have to find the courage and strength to keep going . I can’t remember my life as normal -cancer is in it and all I see is darkness . xx

Hi, how is your dad ? My  husband ha now had 7 immunotherapy sessions , the scan shows huge shrinkage. Which is positive, did this happen with your dad or does anyone else have positive experiences with immunotherapy?  No side affects at all yet, I just wonder though if the more he has things could change ? 

Hi Another day, that is wonderful news for you and your husband. I think if you respond to the immunotherapy then it is a positive sign. My dad was fine with the immunotherapy, the only difference afterwards was he had very occasional severe diarrhoea for a day but he was otherwise fine. Unfortunately the immunotherapy made no difference to his cancer, it kept growing.

Sadly he passed away, very peacefully on Friday at home, with me my husband and his sister with him.

I truly hope the immunotherapy continues to be successful with your husband.  Positive result s like this can hopefully lead to a cure for this horrible disease. Xx

Hi my dad is 75 years old diagnosed in august 2022 , he’s had 9 immunotherapy sessions and up to the last one he had no side effects - the cancer was stable on the last CT scan but then suddenly after the last immunotherapy he had really severe side effects and I can’t help thinking it maybe something to do with not looking after himself ie. Having dirty dog on bed, not having  really good hygiene etc as he got neutropenic sepsis, then it all went down hill, dangerous low sodium now type 2 diabetes and I feel this might have all stemmed from not taking care of himself… trying to forget he was having immunotherapy . Well now the oncologist has said he can’t have anymore so I feel on a cliff edge . But I’ve heard so many amazing results after immunotherapy.

sending you hugs and kisses stay strong people have loved 7 years+ with immunotherapy. 

So sorry to hear the sad news about your dad, heartbreaking. Thank you for to replying to me, very kind….. sending you a hug xx 

Thank you for replying, it is strange isn’t it how one minuite everything seems ok then it isn’t.  We will keep plowing forward with the immunotherapy until we can’t.   The oncologist has suggested another 2 new drugs to go along with chemo should immunotherapy have to be stopped. Maybe you could look into these ? We will try anything…. 

Thank you. I hope the treatment is successful for your husband and you have a positive outcome. X