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Today i found out that my mum has not been randomised for surgery and will continue with chemotherapy for another 4 sessions.
Not sure how I feel- probably a little disappointed? Just get the feeling that surgery is another layer trying to fight it -
For those who have experience of this, should we be disappointed? Should we be looking to have the surgery anyway? What facts do we have about it’s benefits?
Any thoughts welcome
My husband is on the Mars 2 trial and was not randomised for surgery and continued with the further 4 sessions of chemotherapy. He was disappointed at the time, but nobody gives any indication of how successful the operation is.
Hi finished his 6th chemotherapy in September, 2018, and had his latest scan in July, 2019, which showed no progression of the disease. He is fine at the moment and going on holiday next week. Wishing you all the very best. xx
I have to be honest, it did enter my head this week about you and that this was a possibility and that disappointment could be a very real feeling. I do subscribe to the forum so I receive all the emails from here and I read them. But life is very busy so I can't always reply! It was something our nurse spoke about with us when we first went through diagnosis. I honestly feel for you.
Have they explained to you that if you absolutely want the surgery then there's still a possibility you can have it?
I should explain a bit better. I believe if you look up the surgeons at Leicester they will still do the surgery (if they determine your mum a good fit) and you can drop out of the trial. It would be completely your choice.
Give the nurses at mesothelioma UK a ring. They would be able to explain this to you better and may even help you get you in touch with the right people.
I've heard of a few people going this route before.
Otherwise, try not to be down. It's a big, big surgery with no guarantees and very low percentages of success. It doesn't mean the end for your mum and there are plenty of trials she would still be eligible for (again one that is particularly promising is down in Leicester).
I hope this helps. Sorry if I'm not the biggest help!
i really appreciate all your words - going for surgery on our own would mean paying privately for it I guess? Also coming off the care of the trial also. ..... that would be a big decision too. There does seem to be a 50:50 mix of success and failure on the surgery too - although what I don’t know is when it is successful how much more time it is giving to people.
thank you for your thoughts and your time.
Thanks for this - sounds like your husband is doing well. To be fair to the consultant, he did say that my mum would be a good candidate for the surgery though would also fair just as well with chemotherapy- who’s to know for sure - that’s the hard thing. If she had been randomised I would have been feeling all the ifs and the buts too. Just feels it is just a layer of possible help removed.
Enjoy your holiday and all the best too
The people I know that had it done, from what I heard, had it via NHS and a referral - not private at all. Again, it's something that the Mesothelioma UK nurses may be best to direct you in. It's definitely Leicester that are more open to it from what I know. Leicester is more or less the 'hub' for mesothelioma treatments from what I can gather.
Coming off the trial would be a huge decision in such they would have to scrub your data from the control and research. From what I know I think six rounds of chemo is the "standard" in terms of what they would offer outside of research and then the trials are any additional treatments that they can offer on top of that.
Just from personal anecdotes I've heard on the surgery I would say 50/50 is very optimistic? But I could be very wrong. These are definitely questions for Mesothelioma UK nurses and such I would say.
12 years ago when i was first diagnosed i was very disappointed i wasn’t suitable for the first mars trial. This disappointment didn’t last long!!!! I’m certainly not disappointed now!
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