Mesotheliomja

Hi Jayne53

This must be an incredibly hard time for you and your husband right now having to decide whether to have more chemotherapy.

I can't offer any experience but I noticed that your post hadn't had any replies yet. However, I can see that you also posted in the ask a nurse section of the online community and that you've had a great reply from Audrey. If you haven't seen her response yet clicking here will take you straight to it.

Do come back and let us know what your husband decides to do.

x

Hi Jayne

I have not been on this forum for a few months,  so just by chance I seen your post.   I also have been on Nivolumab for a few months and been told its not helping and therefore stopped as doctor says it can cause other problems.  Also having discomfort in ribs like a stitch in my side.  Doctor told me take paracetamol.   , and had one radiotheraphy treatment, which did nothing at all.   Doctor is now trying to get funding for my next treatment which he says would be a trial drug.( Must say I dont understand about this funding thing).   I personally would take more chemo if offered but Doctor says the cells reconize the chemo and fight it.., but as yet I'm not in pain as such,  and I still have hope, one day at a time..  .  so I would say give the chemo a try;

Hi Jayne,

Just read your post and wondered what treatment options you have now ? 

we are just at the beginning of diagnosis 

Hi

The radiotherapy did help with the pain and after having the summer "off" he decided to have a go with the chemotherapy.  It was oral, taken at home and for the first couple of weeks he seemed to do well and had few side effects.  Then suddenly he went downhill and by the time he ended up in hospital a couple of weeks later he was in a wheelchair.  They eventually found out that the chemo had caused a blood clot in the good lung.  They put him on blood thinners which gradually started to help but he was still really struggling with breathlessness and a horrible cough which was keeping us both awake all night.  We ended up back in the hospital where they put him on steroids and the cough disappeared overnight.  He has much more energy and is eating loads.  He also had a pint of fluid taken off the good lung which has helped the breathlessness.  We are really hoping the fluid doesn't continue to build up as he spent two years with a Plurex drain in the other lung which I had to deal with three times a week.  The chemo was discontinued and there are no more options for treatment atm.  He is on a load of drugs including Morphine which are giving him a reasonable quality of life so we have to be grateful for that.  Just have to hope it continues for a while.    Good luck to you. 

Thank you for replying Jayne, it sounds like you have/are having  a tough time…. My husband looks well, his biopsies were taken yesterday so he is sore, just waiting for the “phone call” all the doctors just seem so negative.  It is very stressful, I can’t imagine how you are coping.  He had pneumonia a year ago and recovered. Then in nov his lung filled up and had to be drained. His lung has significant  pleural thickening, so quite anxious.  All the best to you & you need to try to look after yourself too ….

It is mentally and physically exhausting and such a roller coaster of emotions.  This last year there have been at least three times when it looked like the end was nigh and then he has recovered.  But he has exceeded expectations so we are grateful for that.  Just got to take one day at a time.  You take care too.