Would like to find other females with the same condition, as it seems quite unusual , I am here to help understand and also to try and help any other ladies diagnosed with this and make aware to them they are not alone x
I was diagnosed just over a year ago. Had Immunotherapy but could not tolerate it, was then told I was operable , had a big op but the meso came back after 3 months, it's so crafty as someone wrote. Now I'm on chemo let's see of it works. Been in a lot of pain but wonderful palliative and nursing team have dealt with that. So let's be positive!
Hello, sorry to hear you were diagnosed. Where do you think you were exposed to asbestos ? Did you have symptoms ? My husbands next treatment may be immunotherapy should the cancer start to grow. He had 6 rounds of chemo which worked well, not operable though. The hospital has been amazing with us which does give us a lot of comfort.
Hello. Unfortunately, I have no idea where I was exposed, but they suspect one of the old buildings I worked in for thirty years in my time in the police. Solicitors have been fantastic and have got straight onto the job, trying to see if they can identify the building (no hope!) and getting me all the helpful benefits they can. All the medical staff have been lovely, but it has been a terrible shock to be told this when I have never (knowingly) had a day's serious illness in my life. Of coure, it was there all the time, lurking, I know that. They say it doesn't raise its ugly head for about twenty five years afer you've been exposed. My symptoms started in October, when I started to get seriously out of breath when climbing stairs and felt as if I had no energy.
Yes it was a terrible shock for me as well. I was diagnosed in November - they initially thought I had pneumonia but then a CT scan and biopsy showed it was mesothelioma. It's the fact it's incurable and so life limiting - that's the hardest thing to accept. I'm only 56 - if I was older it wouldn't bother me as much. I had the EPD operation in December at Leicester - which hasn't been easy to recover from but I'm getting there. I will have scans every 3 months and also have immunotherapy when it starts spreading again. No idea where I got it from and solicitors have not been able to find the cause either. I hope the immunotherapy works for you
What is the EPD operation? (I know I could Google it, but as I'm here!). I've learnt all sorts of things since getting the news. People were saying to me 'Well, My Auntie Mary has lived for years with only one lung and she's fine etc. etc.' but the first doctor told me they don't remove lungs any more as it doesn't help and in some cases makes people worse. The doctor I saw yesterday, though, was singing the praises of immunotherapy and says it has come on in leaps and bound and is much better than it was a couple of years ago.
Yes I've heard good reports about immunotherapy. Extended pleural decortication - they basically scrap the cancer off the linings of the lungs and maybe the heart and in some cases replace the diaphragm. It doesn't cure it but the idea is that it gives you more time. However even the doctors say its a lottery and could end up growing back so quickly that it wasn't worth having the operation. There are criteria for the operation,age, health ,staging etc - so not everyone suitable.
They used to remove a lung as well but they don't do that anymore. I wish people wouldn't say my aunt lived with 1 lung etc. It's not the lung - it's that this cancer is incurable. Some people do live for years though- so we can only hope.
Hi Louiseleslie - how are you doing? I see numerous replies.
If you still want to connect I'm a 61 year old female diagnosed with Mesothelioma of Pleura last October. It took from March to get the diagnosis (specialist in Cardiff) during which time I had water on the lung that lasted five months. Lots of further twists and turns since - immunotherapy approved after a request rathe than chemo and one treatment in December. January one put on hold due to low blood platelet complications. Long story short chemo starts Monday fingers crossed (following a platelet infusion this week).
I hope the chemo goes OK. I had the EPD operation in December 2022 and have now been recommended for immunotherapy. I go for the initial appt this week.
As I'm so young (57) I will have the immunotherapy, if accepted. I suppose my only reservation is I feel well at the moment and am concerned about having treatment which may make me ill and ultimately won't cure me.
