Mesothelioma

A place for people affected by mesothelioma to support one another, ask questions, and share their experiences.

Progression of mesothelioma

Talc
Posted by

Hi all, just looking for advice. My husband was diagnosed with stage 3/4 pleural Meso last March, They gave him about 6 months, but, he responded so well to 6 rounds of chemo, & being only 52,  the hospital decided to go ahead with surgery. He had pleurectomy & decortication in August. It was a massively tough operation, his recovery was slow. He then had a further 5 rounds of chemo & was doing amazingly well, by Christmas he seemed ‘fully recovered’, we dared to breath again. He returned to work, painting & decorating for friends & family, it gave him a purpose & he felt great. Over the last 6 weeks he’s been slowly going down hill, sleeping all day, not wanting to eat, rasping cough. He hasn’t had a scan since January, which showed no significant change. 

The hospital have said it’s the progression of the disease & aren’t currently going to do a CT scan. Just wondered if anyone else has had the operation & how are things progressing for them ?  

Thank you 

hurtandconfused981
Posted by

Hi Talc,

From what I've read very rarely does the surgery cure anyone with meso. Some people seem to have better responses than others from what I've heard and researched. It's quite experimental and no one really knows whether it works or doesn't though most research points to the latter with a few lucky ones that seem to have lasted a long, long time.

It's strange that they don't want to do another CT scan with his last one being in January. Are they now planning to move towards a more palliative care pathway? If so, I would be looking at alternatives. There are a number of clinical trials that he may be able to go on in regards to immunotherapy.

There are plenty listed on: https://www.mesothelioma.uk.com/

Talc
Posted by

Hi hurtandconfused, thanks for the info. Yes,  it’s seems palliative care is what’s being offered now. I will definitely look at trails though. Anything is worth a try. 

hurtandconfused981
Posted by

It really is. I'm sorry to hear all this after everything was going so well too. Don't give up hope and stay positive!

pottermouse
Posted by

Hi Talc

My husband was diagnosed with Mesothelioma last Feb 2018 and it was very early stages T 1 and he elected to go for surgery but not just at any hospital he chose one of the best thoracic surgeons in the UK who had a great record with helping people with this dreadful disease, he had is operation last May and all went well and I don't need to tell you how much of an operation it is, but all went well until Nov when it showed signs of return, he had only two sessions of chemotherapy before they were aware that it was not working, in fact its made things worse. He now suffers from lack of appetite and has pain in his scar from nerves regrowth. I am aware that not many people have the surgery or even the opportunity, but there are a great number of people who are still alive because of it. This cancer is so aggressive it takes you by surprise one day he was mountain biking in the Dale's and the next just spaced out on the sofa.

We are going to try and get on the MiST trials in Leicester as its not randomised so hopefully we'll have more information once we have have seen the oncology department there next week. 

I would like to know how your husband is doing now and how he has coped with the operation 

Positive is all that you can do 

Take care ☓ 

Barb 

Barb x
Talc
Posted by

Hi pottermouse - thanks so much for your reply, it definitely helps knowing others are going through similar experiences. 

My husband did brilliantly directly after the operation, I couldn’t believe after such tough surgery how quickly he bounced back. The 6 rounds of chemo prior to surgery had reduced one of the tumours enough to operate on, this was imperative as it was pushing on his carotid artery, the other 3 smaller tumours, at the base of the lung, had continue growing & had joined as one mass, they also managed to remove this, so he was tumour free. 

He had a number of setbacks as the weeks went on, his lung collapsed several times & fluid was a problem, but the surgeons & my husband persevered & eventually everything settled. He had a further 5 rounds of chemo, & by Christmas was doing really, really well. He went back to work in February,  life settled & we got back to some sort of normal. Then, 6 weeks ago, literally out of the blue he started to feel unwell again, His cough has got progressively worse, complete lack of appetite, extremely tired & some pain/discomfort  in the stomach. 

I shall look into the MiST trial, many thanks for this  

keep in touch & as you say, stay positive.

Take care X

Talc
Posted by

Dear Barb, there is nothing I can really say, other than I am so sorry for your loss. We’re now heading in the same direction. One minute he was out mountain biking, the next almost unable to get off the sofa. Thinking of you at this awful time. Xxxx

pottermouse
Posted by

I am so sorry if you are heading in the same direction, I'm not sure what your situation is but if you need to chat I am here for you, this is not a good time for a lot of people, and I feel that we should be doing far more to make everyone aware of this dreadful cancer

My thoughts are with you too.

Barb xxx

Barb x