Immunotherapy 5th cycle feeling worse ?

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Hi

my father,73 got diagnosed with stage 2/3 Pleural mesothelioma in June of this year following biopsy confirmation . He had a pleurodesis procedure at same time to seal up the space as he had a pleural effusion at the time. Fast forward to November and he has had 5 cycles to date of immunotherapy only and he seemed to be improving however now he feels quite ill and shaking in his body, he’s losing weight of 2 pounds a week and has chest pains and severe tenderness in the stomach area.( separate issue they wanted to put a camera down in his stomach) as some thickening was seen on initial scans. 
Has anyone found their loved one or themselves went on to feel worse during treatment. It’s so difficult to know if it is the treatment or the illness. He’s had a first scan since starting treatment and he is due results first week of December. Terrified. I am so close to dad and my children will miss him terribly. Can the immunotherapy make the meso symptoms worse?? Thanks for reading

Liz 

  • Hi  Liz/ 

    I'm sorry to read how poorly your father is feeling after his immunotherapy and assume that you have reported this to his hospital team.

    I'm not a member of this group but noticed that your post hadn't had any replies. Responding to you will 'bump' it back to the top of the discussion list again.

    ((hugs))

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  • Hi, it looks like your dad and I have the same problem, I’m also receiving immunotherapy and just have my fifth cycle of treatment.

     I strongly advise you to speak to your fathers hospital team and see what they say.

    on my second treatment I had a bad reaction to the drug and had to have hydrocortisone to counter act the first drug, I shook uncontrollably but they knew what the problem was straight away and dealt with it.

    Please speak to your support team about the problem.

    Good luck.

  • Thank you. Were you told it’s generally the treatment adding to the worse feelings or the disease itself. My father has result of scan call next week. Praying it’s had some effect. I hope your treatment works for you too 

    Liz 

  • Hello Liz, So very sorry to hear about your very precious dad. Its so hard for anyone else to understand just how much our close family are loved. The immunotherapy, as i understand can cause reactions anywhere in the body and if it does they usually halt the treatment to reassess. The older our dad or husband is the harder the immunotherapy treatment can be to take. They are two drugs and one is quite toxic. it is taking of the protections of the cellular body and asking the immune system to fight. Sometimes it goes overboard and does too much and can set of reactions. Good to stop when this happens. Immunotherapy does not cure. Look for support in other areas to help with the overstimulation and talk to the team looking after him and get as much information from them as possible as to what is going on. When the drugs take off those check point inhibitors it is leaving the body open to the immune system and it can attack parts of the body, not knowing what is him and what is the cancer. its a very tough one and my husband is due to have these drugs that remove check point inhibitors in January. I am concerned but he wants to do this and there isn't much out there that helps with this disease. The pleural cavity is large and it has tumours and they cant remove the whole plural cavity. its a tough one. but ask the team looking after him and get more details so you get to understand what is happening to your dad. Sending you so much love, Liz.  Suzi  

  • So sorry to be reading this ,my thoughts are with you .This is all to familiar ,my husband had immunotherapy treatment 4 sessions ,no side effects in his case, I put it down to the illness (Mesothelioma).likewise he lost a lot of weight ,no appetite,unable to do anything ,just in so much pain x He was 72yrs

    Hopefully his appointment went well in December and you are both able to get the help and support you need .tc 

  • Hi, I had tge same on second treatment, took two phials if hydrocortisone and two of steroids to stop it. Mine actually happened just as I was leaving after treatment Canula removed so they had to get one back in first with me shaking all over the place. It was horrible thought I had had it. 

  • So glad this was dealt with quickly for you. It can be scary when our body begins to feel out of control. I am taking it that since you had the hydrocortisone no more problems of this sort. I hope you are still doing really well on the checkpoint inhibitors. Love and healing to you on your journey. 

  • Thank you he had a similar experience of shaking inside his body like a banging inside. Unfortunately the immunotherapy didn’t do a thing , in fact the cancer had grown. He has now gone on to chemo so far apart from some side effects his main symptoms have improved back and chest pain , night sweats subsided. He’s only had 1 chemo session so we will have to see as it’s also in his tummy lining sadly too. Everyone is different some people get good results with immunotherapy. I was once told if you have good gut health ( my dad doesn’t) immunotherapy may work better than those with poor gut health. Not easy when you go off food.Best wishes for your treatment 

  • That is very scary isn’t it. My dad had a similar experience he got banging inside his body about 5 days after his first immunotherapy. He’s now moved to chemo good things have improved for you