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Mesothelioma

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

New to mesotholioma

Nordstrand
Posted by

Hello, my poor mum was diagnosed with this horrible cancer last month. I think she is in stage 4 already but I feel like she has been given very little support, hope or information. She is incredibly thin already but is still determined to be independent around the house. She can't get comfortable because she has no padding left on her bones. I'm desperate to help her but don't really know what she'll need as this progresses. The oncologist was very brief with her, it doesn't feel right to give up. How much information were other people given at diagnosis? Were people told what chemotherapy involved so they could make a balanced decision about whether to have it? I've read on here that someone had some treatment to prevent the spread of the cancer into the drain scar on having it removed, mum hasn't been offered this, should she have been (she had her pleurex drain removed 2 weeks ago)? Has anyone out there had success in slowing the spread of this cancer with diet, alternative therapies etc? Sorry, I don't really know what questions to ask because I simply don't know what to expect, just that it'll probably get worse. I have 2 very young children and live an hour from Mum so feel like I can't be there for her all the time but I'm anxious to get her the care she needs,

AprilTS
Posted by

Hi

So sorry your mum has been diagnosed with this. A lot depends on how old she is and how fit she was before diagnosis. My dad is 85 and was already frail when he was diagnosed, so the doctors felt he couldn't cope with active treatment and only offered him palliative care. I think this was the right decision for him.

I've seen posts from other people on here who have had active treatment, but it doesn't seem to have made very much difference and the side effects are very unpleasant. 

They tried to do a biopsy but weren't successful so we don't know what stage dad is at. He was diagnosed in September and not much changed until a couple of weeks ago when his right leg became weak and his foot started to drop. He can still walk using a frame but is slow and tires very quickly.

Dad is taking a lot of morphine, both slow release twice a day and liquid oramorph every 2 hours. He gets bouts of bad pain every day when medication doesn't really help. He can sometimes sleep it off, and when he wakes he is quite cheerful and takes an interest in life. He doesn't eat much but likes fortisip and drinks 2-3 every day.

He has had good support from the palliative care team at the hospice who review his medication frequently and increase it as needed.

I hope your mum has good support where she is, and you all manage to keep a normal life going as much as you can.

April

Happily retired animal lover
Rose03
Posted by

Hi Nordstrom’s,

Your post makes me sad. With this destructive disease - it does not seem much to ask that everyone, regardless of age or stage, should be given a clear plan and next steps - whatever they are. It is awful to feel like you have to chase for answers or a plan for your mums care.

What I would suggest is to contact the Mesothelioma UK charity. I did when my mum was first diagnosed and had seemingly been left in limbo. They were so quick to jump in and contact all the right people and my mum was directed and given an appointment with a specialist a week later - they  really are a huge support. Use them. 
My mum was diagnosed at an early stage - went on the Mars 2 trial. Was not given surgery and had 6 rounds of chemo, which she has just finished. Results of scan to be given in the New Year.

I hope your mum gets the care and treatments to help her - whether that is palliative or active. 
Wish you all the best.

flower52
Posted by

Hi Nordstrand,

So sorry to read your post.   My husband was diagnosed with Mesothelioma in April, 2018, and went on the Mars 2 Trial, with 6 rounds of chemo and was not selected for surgery.  Please read my profile.

I also would suggest you contact Mesothelioma UK as we found them absolutely excellent with advice and recommendations.   My husband had scan on 17th December, and we hopefully will get the results early in January.

Hope your Mum gets advice and care soon.    Good wishes for 2020.

Flower52