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Mesothelioma?

(24 Posts)
hellhasnofurylikeahungrywoman Tue 19-Sep-17 07:28:17

Does anyone have any knowledge? My dad has been diagnosed with this, our family relationship isn't the best and I can't really ask questions but would like to know more.

TurboTheChicken Tue 19-Sep-17 07:44:31

So very sorry to hear the news about your Dad, the Cancer Research website has a good section about Mesothelioma - here.

My stepdad had Mesothelioma, I can give you some facts about his journey but every case is individual so not sure how helpful that would be. His life was extended with chemotherapy using the drug Alimta which at the time (2007) was a new treatment.

If you can repair your relationship then try, that's all I can say. I hope it goes well for you and your Dad.

hellhasnofurylikeahungrywoman Tue 19-Sep-17 08:30:18

Thank you. The relationship is not really repairable (my mum has Multiple Personality Disorder plus other mental health problems that are deep rooted and ongoing), dad doesn't see the oncologist until next week but this has come completely out of the blue, he's had chest pain for a while and there was a shadow on his lung 18 months ago and his lung kept filling with fluid but nothing was done about it because he kept discharging himself from hospital at mum's say so. I know it is inoperable and I know he needs chemo but that is about it right now. I am worried because I know he will shelter us all from the truth because he won't want to worry mum, she is his whole life and he does everything he can to protect her and keep her fragile mental health as good as he can. I wanted to hear other peoples stories so I can get some idea of what is ahead.

Aph413 Tue 19-Sep-17 08:47:06

This charity is focussed entirely on mesothelioma so there should be plenty of information and where to get support on here www.mesothelioma.uk.com
My husband's uncle unfortunately passed away from mesothelioma last year which is how I know about the charity. Sorry to hear about your dad flowers

TurboTheChicken Tue 19-Sep-17 10:19:24

What an awful situation for you.

Could you suggest that you go with your Dad to the oncologist? You would have the opportunity to ask questions but your Dad might actually find it a practical help, take a notepad so you can take notes, this really helps as sometimes there is too much information to process immediately.

My stepdad had one round of chemotherapy, we lost him 13 months after the initial diagnosis. He used an oxygen tank for the last four months but still managed to get away on a cruise during that time. The pain was managed well by his team and he was conscious until about 48 hours before he went.

We made the most of the time that we had and that brings me a lot of comfort, I hope you get the chance to do that with your Dad.

MyGuideJools Fri 22-Sep-17 09:33:47

flowers so sorry to hear this. My dear dad passed away 2 weeks ago from this. He didn't get as far as chemo as he developed pneumonia. I won't go into the gory details as I don't want to upset you but please feel free to pm me if you want to know anything or chat xx

79Fleur Fri 29-Sep-17 09:56:31

Hi, I'm sorry for your situation.
Unfortunately the outlook is bleak my dear mother passed away many years ago now from mesothelioma. She was diagnosed in May and passed in the October of the same year ..she was 44.
This was in 1999 so treatment and prospects may be different now.
If you feel you can, try and say all you need to / try build bridges etc.
I feel incredibly sad for all individuals affected / touched by this terrible often preventable disease.
I would suggest your dad get some good legal advice if he is aware of where he was exposed to the asbestos, even if not I believe there is provision and recompense.
Pls feel free to pm me if you want to.

mrstumble1 Wed 10-Jan-18 20:30:09

MIL has just been diagnosed with mesothelioma. In second of three stages. Not curable, some treatment available. Can’t currently start treatment due to complications with liver.

I guess my questions are (that I don’t want to ask her at the moment) is it a rapid decline? Or a more prolonged gradual one?

If you don’t mind answering, how long was it between diagnosis and your loved one passing? Oncologist was very vague (maybe for good reason), said maybe a year, maybe 2+.

Thanks.

Clutterbugsmum Wed 10-Jan-18 21:19:33

My dad was diagnosed about 2, 2 1/2 years with mesothelioma before he died.

He didn't die from the cancer, he had a blood clot go through his heart when he was having fluid removed as he retain around his heart and lungs.

mrstumble1 Wed 10-Jan-18 22:25:39

Thanks for replying Clutterbugsmum. Sorry to hear about your dad.

Was your dad fairly well in those 2-2.5 years or was he quite unwell?

The reason I’m asking is DP and I are engaged, had been saving to get married abroad. Is taking a while, due to various unexpected things that have happened with house move etc.

Wondering if we just need to shelve those plans as MIL won’t be fit to travel and/or because time is not on our side. Maybe a small UK wedding sooner is the route we need to go.

Clutterbugsmum Thu 11-Jan-18 10:14:27

He was ill/unwell with various things in the few years leading up to finding out he had the cancer. Then after diagnoses he went down hill quite quickly I'd by the end of the year he was retaining fluid as in he looked nine months pregnant and having litres of fluid removed every 3/4 months.

I would as no cancer sufferers suffer the same and your MIL may be luckier and has been diagnosed earlier then my dad.

BonApp Fri 12-Jan-18 16:09:50

@mrstumble1, I'm so sorry to hear your mum has this horrid disease. There are a few different types of Mesothelioma (my dad sadly has the most aggressive type - we are 4.5 months in to a 6 month prognosis) and different locations it can occur, so might be worth asking which one your mum has. Chemo won't make any difference for my dad so he was straight on to palliative care sad

I too wanted to know how things would progress and tbh he's been pretty much ok. He's had some nerve pain from the pleurodesis (lung drain/talc procedure) and as we found out recently the cancer has spread and he says he can feel some aches in those places. He's on a decent amount of morphine and other drugs and he is pretty drowsy and because it's in his lungs, he's breathless. If he has a busy day he often feels more tired/in pain/fed up the following day. So he does have to take it easy.

However, dad went on holiday fine in the autumn and was fine to travel.

My brother brought his wedding plans forward so dad could attend. It was about 6 weeks ago and Dad was out until 1am and had a lot of fun. I think he would find it harder now so I'm glad they did it then. It was organized very quickly and it was perfect - it wasn't all the bells and whistles they'd originally thought of but the day was so full of love.

I guess your mum's situation might depend on a treatment plan, but having a plan B for your wedding might be the way forward.

Feel free to PM me if you want to chat... Best wishes to you.

@hellhasnofurylikeahungrywoman, how are things with you op?

Haberpop Fri 12-Jan-18 17:08:27

My dad has recently been diagnosed too. He was in hospital over Christmas with fluid on his lungs and around his heart and with a blood clot on his lung, is this part of this awful disease?

BonApp Sun 21-Jan-18 14:34:39

@haberpop, so many people seem to have this now, I’d never heard of it before. Blood clots haven’t “featured” in my dad’s experience so I couldn’t comment on those. Could you ask the oncologist? Hope your dad is comfortable and you are ok.

ladyballs Sun 21-Jan-18 14:42:52

My dad was diagnosed about 5 months ago. He's had 4 rounds of chemo and feels well in himself, apart from tiredness. The last chemo was hideous.

flowers to all affected.

Fenellapitstop Sun 21-Jan-18 14:49:09

My df had this, he only had 3 months from diagnosis to passing. His had progressed too far for any treatment

MyGuideJools Fri 26-Jan-18 22:55:09

Hi. I've just found this thread again, so sad to see more people have joined.⚘
My dad was ill for about a year but wasn't actually diagnosed with mesothelioma until 2 months before he died. He had a procedure to drain fluid from his lungs and a biopsy. Before this they thought he had pulmonary fibrosis.
He still managed to get out and about and drive until about 6 weeks before he died, although he was breathless.
unfortunately he went downhill quickly and contracted pneumonia. He was given IV antibiotics but his lungs were too damaged and he died in hospital.His breathing became more and more laboured but he died peacefully in his sleep. I was holding his hand.sad
The last 2 weeks at home were tough, he had portable oxygen but was so so breathless. He lost his appetite and slept a lot. He couldn't sleep flat tho.
It's a bloody horrible disease and he was so so bravesad
I hope this answers some questions for other posters. x
.

mrstumble1 Sun 11-Feb-18 07:38:02

Thank you for the replies. Has helped to read other people’s experiences.

MIL still hasn’t started chemo as she’s not yet we’ll enough to. Although I think she’ll be ready to soon.

Having her lung drained again next week.

Taking each week as it comes!

MyGuideJools Fri 16-Mar-18 07:18:53

@mrstumble1 I've just come across this thread again and wondered how your MIL is doing?flowers

mrstumble1 Fri 16-Mar-18 08:22:06

@MyGuideJools thanks for asking. MIL has just started chemo. Feeling pretty rough at times but consultants are happy with how things are going. She’s not getting out and about much due to the build up of fluid on her lungs being so painful but I think everyone’s accepted the situation and we’re just trying to make the most of the time we have got left.

Thank you for sharing your experience. Was particularly useful when her diagnosis came out of the blue. So sorry your dad had to go through it too.

MyGuideJools Fri 16-Mar-18 08:59:32

I'm glad things are as good as can be in this dire situation.
I think you have a good attitude, taking each day as it comes and making the most of things. I wish you wellflowers

Haberpop Sun 25-Mar-18 16:31:47

Sitting waiting for the call to say dad has gone. He was diagnosed before Christmas and was told he could have five years. 10 days ago he collapsed with a blood infection and now he is in a hospice for end of life care. Two weeks ago he was sick but ok, today he is at end of life.

Fenellapitstop Sun 25-Mar-18 17:39:41

Thinking of you, it's hard waiting x

MyGuideJools Sun 25-Mar-18 18:16:09

haberpop I'm so sorry🌷
there are no words, it's an awful disease

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