Looking for similar experiences for my dad - pleural mesothelioma

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Hi everyone.  I'm part of this forum, due to my dad sadly being diagnosed with pleural mesothelioma 2 years ago. It wasn't detected straight away.We had to wait for at least one year before the doctors confirmed that it was pleural mesothelioma. Since then, he has undertaken chemotherapy, which has helped with some pain due to the cancer spreading on the sciatica nerve. He did carbo/pemetrexed for 6 cycle. He then stopped and pet was encouraging,  the pain had gone down. We were happy. After 3 months new scan and he had to restart, this time on another chemo. It didn't work and he stopped it after 2 months. He ended up on the wheelchair because unable to walk due to the sciatica nerve pain. New scan confirmed disease progression. The doctor proposed immunotherapy with nivolumab,  he has had about 3 cycles by now, but after only one week from it, we realised he was losing the sensitivity in his hands. Day by day this has worsened, to the point he is now not able to move arms or hands or fingers. Almost completely paralysed. We have to feed him, clean him, everything. He is only 62 and the strongest man I have ever seen. 

So this is my question for you: has anyone witnessed a similar situation? Paralysis of arms or legs, like a collapse of the muscles? Can this cancer or the treatments debilitate you to this point? I am over concerned and struggle to think this could be the end Pensive. Thanks so much

  • Hi, sorry to hear about your dads situation. I got peripheral neuropathy being fuzzy/numb hands but it hasn't progressed beyond that

  • I’m so very sorry to hear about your poor Dad it must be awful for you to have to watch all this unfold. I also have mesothelioma, immunotherapy did not work for me so I too switched to chemo with the first rounds shrinking tumours however things  started to grow again after a few months so I have recently started  a new regimen of chemo. I haven't had the same side effects as your dad but nerve involvement has been painful. I’ve got neuropathy in two fingers, pins and needles in my arm and pain in my shoulder and neck at the moment we are not sure if this is all from the cancer I'm waiting for MRI scan  results.  From what I read everyone’s experience with this disease is different and I am  sorry your Dads has left him so disabled . Sending you love and hugs xx

  • Hello, my husband had chemo  the same immunotherapy… he had around 18 plus cycles of immuno then it all just went terribly wrong. However he never had the symptoms your dad has. I expect everyone is different, so sad .. 

  • I started immunotherapy 3 months ago,initially had some neuropathy in fingers but has since gone,have his blood tests shown anything,like vitamin b12 low,it can progress to arms shoulders.