Dad with mesothelioma

Hi,

My dad was diagnosed with mesothelioma last October. He was having pleural effusions (I think that's the right term) to drain the fluid build up but since January, the fluid has stopped coming. My dad hasn't asked for his prognosis as hes doesn't want to know, and at his meeting with the consultant this week he was told he has moved on to the next stage of the condition.  My dad did try  one dose of chemo but it left him feeling so ill he didn't want any more. He sleeps a fair amount of time and is experiencing some pain in the lung area, but refuses to give in and tries to do what he can when he can bless him.

I guess my question really is why do you think the fluid stopped like that? Could it be he is quite advanced with the disease? I don't  like to ask these questions to the doctor as my dad doesn't want to know etc but I want to have an idea of what's going on. I've never heard of it just stopping like that.

 

Thank you.

  • Hi there ...

    Sorry can't answer your question as not qualified... but in answering you , your thread will go back to the beginning... and someone may pick it up who knows more ..

    But you could always ask his Dr, out of ear shot ... or ring the nurses here or McMillan... they are all qualified and know lots more then us ... their number is on both their home pages ...

    Chrissie x

  • Hello, 

    My brother has mesothelioma and had the effusion at the beginning which led to his diagnosis, he had a chest drain fitted and for some weeks had regular drains then the effusion stopped on its own, the doctor said it was that the cancer had grown in the plura so the liguid had no place to collect as the tumour filled the space instead.

    this in reality just ment that my brother didn't have to be bothered every week for chest drains and could have a fairly normal life for many months.

    this might not apply to your father though as only the doctors and ct scans can really know.

    all the best

    pete

  • Hello. 

    I have Mesothelioma too. It’s a horrid thing to live with let alone the treatment. It was tough, the chemo.. it’s a very strong dose what we get given, and it does make you question if you want to do that a further 5 times.

    To my knowledge of my own status with my Peritoneal Mesothelioma, I’m incurable, inoperable and on palliative care. I know that the cancer spread from my belly to my lungs, and I know there’s fluid on the one. However I haven’t been offered any ‘debulking’ surgery to help ease the pain and reduce the fluid. 

    Ask your dads doctor or oncologist about a Debulking surgery. It’s not curative but will help with the pressure in his chest and may help him with his daily living. 

     

    I hope I’ve been some sort of help. 

    Izzy. 

     

  • Thank you. That makes sense. My dad had a chest drain too which was working fine and the nurse was coming every week to drain it but the drain became blocked after about a month. The doctors cleared the blockage and drainage started again, but only for a few weeks after which it stopped but scans showed no fluid in the lung to be drained. So maybe it's similar. We have been told the cancer has grown as it is bound to do so. Thsnk you for your reply. I hope you brother is doing ok.

  • Thank you for your reply. I am sorry to hear you are going through this yourself. I hope you are not too uncomfortable, and I really appreciate your advice.

  • Hi Vic,

    so sorry your dad has been diagnoised with this horrible disease,

    my dad had pleural meso and he also intially had a drain they told me they put talc inbetween which stops it building up so he didnt have to have a drain again , i found alot of support from HASAG support who specialise in meso they were amazing they have meso specialist nurses who can help you and they help in every area.

    i used to attend there support groups with dad which was very helpful .

    my dad refused morphine and took cannabis oil which helped alot with the pain he also took paracetmol every four hours which the royal marsden said is a good for pain relief as any.

    its a real journey my heart goes out to you the only advice i can give you is take one day at a time but make the most of very day telling your dad how much you love him and all the good things you like about him make memories . time i very precious , i wrote a diary every day of all the memories which has really helped me now as my dad died in december 2018 , i never thought id cope however because of the love , memories  we shared and no regrets on time we spent together, this  has given me much peace sending you lots of hugs xxxx

  • Thank you for sharing your story. I'm sorry you lost your dad. I know it's going to happen but just cant and don't want to imagine it. I'll look into the HASAG support you mentioned. He is taking regular paracetamol as recommended by the specialist, but wants to put off the oramorph as long as he can as he says that only leads down one road bless him. It's funny you mention the cannabis oil as my son said about that too.  I don't know how you would go about getting that. Like you said you definitely have to make the most of every day, and we usually find a lot to laugh about which is lovely.

  • ah thats good that you laugh my dad was a real funny charachter we even had a party for him as we called him the DON so we had a pretend mafia party even though he was very ill then he got up and danced with me ill always treasure that as i have it on video. i used to play him  and the other guys on the  ward lots of music when he got bed bound even got him a singer inwith a guitat into the hospital 

    my dad felt the same about the morphine and im so glad he stayed off it  untill the end you can buy some cannabis oil on line cant say where i got mine as it was the propee  stuff but i know you can get the legal stuff in health shops.

    keep laughing if you need to contact me lots of love xxx

     

  • Hi Izzy, I am so sorry that you too are going through this awful disease and whole heartedly appreciate you replying to the message...... you sound the same stage as my dad is. We don’t actually see an Oncologist anymore, last consultation was in February after deciding he wanted no further chemo.Like you no more treatment was offered so we do often feel we are on our own. Fortunately I am a nurse so can help with seeing Gp and info etc.I wondered if you have tried the cannabis oil mentioned in someone else’s post? We are considering this for dad too?Wishing you peaceful and good days x