Justin1970

Hi lily I hope your well and enjoying life best you can, I seem to be alright at at the moment on the lower amount of dexamethasone and have been told to take these for another fortnight and then stop them and see what happens, I am a bit worried but I will ask for a mri scan sooner than December just incase there is any more brain mets even though they have said it was brain swelling due to the gamma knife radiosurgery it's still a bit worrying, I do think the the dexamethasone is causing me breathing problems and a rash on my body but they didn't seem over concerned about it even though the Internet says it could be an allergic reaction so I'm not sure what to do lol, I think your right about this being our life now unfortunately but aslong as we all get through this I guess everything will be worth doing, All the best Take care Justin x

Hi Rosie Welcome to the forum so sorry your going through this, it really is a very hard time, I had a few problems during the treatments but eventually everything settled down and you will start to feel better, goodluck with everything, and keep holding on to your hope, All the best Take care Justin x

Hi all Thank you for your messages, I've been on the dexamethasone for a month now and cut down to one tablet per day everything seems to have settled down but I'm worried and reluctant to stop them altogether incase everything starts again, I know I have to try it to find out what will happen but it is worrying, the dexamethasone has caused a rash across my back again like it did when I took them before but I would rather that than anything else, I hope everyone is well Take care Justin

Welcome to the forum Bob I'm really pleased you got this under control quickly and are doing so well, I'm sure someone will be able to help you with some answers on here, goodluck with everything Take care Justin

Hi Chazs Sorry your going through this, but you really are not alone in your feelings we have all been where you are right now,it is very scary and daunting but when you start treatment you will feel a bit better about everything,I know when I started it really helped just knowing that something was being done, things will get better and you will have many low times and bad days if you can get some antidepressants or something to help it would be worth trying all the best Take care Justin x

Hi laurel I know it's really difficult times we also have to wait a while in the UK and it is hard,I was diagnosed in August last year and started chemotherapy and radiotherapy at the end of October the waiting was terrible but I did feel a bit better once I got started because atleast you feel like something is being done to help you, I didn't get a second opinion but did question a few things now and again regarding scans and tests, try and stay strong and positive through the anxiety I did take antidepressants and still do, it may take a while to build up in your system but will help with the worry, you really aren't alone through this we are all here to help you get back on track and start living again like you did before all this,my life is definitely different now but you will adjust to the new way of dealing with it, goodluck with everything all the best Take care Justin x

Hi laurel Sorry your going through all this it really is a difficult time, I had a chemotherapy mixture of cisplatin and vinorelbine I did have some side effects but did manage to get through it, the radiotherapy wasn't to bad at all until the last week or so, I think I had around 30 sessions of it but it was towards the end when I couldn't swallow properly because it hurt but there was stuff that helped, I'm sure it has also made me shorter of breath but it is all manageable so please stay strong and positive and goodluck with everything all the best Take care Justin

Hi misty Welcome here this is a great community and a fantastic place for help and support, I really hope all goes well with your surgery and they get rid of this for you, stay strong and positive all the best Take care Justin x

Hi wavelength Welcome here this is a great community and very supportive, most of the questions you will be asking goodluck with all the tests and hopefully some good news, All the best Justin

Hi Lori Welcome here and sorry you have to be but this a great community and very helpful someone will come along with some good advice for you, my cancer spread to my brain and I had to have gamma knife radiosurgery done on them which is working well, I also have low pdl1 so not a candidate for immunotherapy and because the cancer had spread no surgery either, I have had chemotherapy and radiotherapy and fingers crossed everything seems to working at the moment goodluck with everything All the best Take care Justin x

Hi Debbie Sorry to hear your going through this,in the beginning it is very hard to get to grips with and all of us have felt the same way as you are but please try and stay as strong and positive as possible until you have all the information and get a treatment plan in place,everyone is here with you and will help you through this All the best Take care Justin x

Hi sue Welcome to the forum sorry you have to be here, when were you diagnosed and how rapid is the progression, have you had any treatment yet Take care Justin

Jack, That's brilliant news well done on NED now celebrating I hope Take care Justin

Hi Lori I still find it difficult to navigate the forum aswell I miss lots of posts and then find them lol, I think by the sound of it the swelling from the gamma knife radiosurgery is probably pressing on something a bit so causing a slight problem, I agree with you that we know if something isn't right lol, hope your feeling well have a great week too Take care Justin x

Hi lou Thanks for your message, sometimes it seems like once they finish with the cancer side of things they don't really want to know about anything else so refer you to a gp who then has to tell them there job, I was surprised they said I didn't have to have another MRI scan or ct scan for 6 months when originally it was 3 months it does seem crazy but I guess they know what is best lol, anyway rant over hope your well take care Justin

Hi Lori Thanks for checking in, the oncologist said it was probably a trapped nerve and nothing cancer related and told me to talk to gp to arrange physio therapy,when I went to see him he said it was definitely not a trapped nerve it was more likely seizure activity due to swelling after the gamma knife radiosurgery, so he contacted the oncologist who then agreed with him and has put the anti seizure tablets up and started me back on dexamethasone steroids, I wish they had listened to me in the beginning and I possibly could have avoided this but thankfully it didn't turn into a seizure, thank you again for taking the time to message Hope your doing alright and not stressing to much all the best Take care Justin x

Lori Goodluck with whatever you decide but I think I would go for the bronchoscopy aswell definitely best to find out what's going on sooner Take care Justin x

Sajid I'm sorry for your loss try and stay strong take care Justin

Hi Sorry to hear what your going through I hope you start feeling better emotionally and mentally all the best Take care Justin

Hi Lori Fingers crossed everything will be good tomorrow ,I'm having a few problems but I'm going to ring the cancer department tomorrow and see if they have any answers for me take care Justin x

Hi Lori Goodluck tomorrow with the pulmonologist I really hope you get some definitive and good news, I know how hard it is waiting but hang in there all the best Take care Justin x

Hi june This journey is filled with overwhelming sadness unfortunately, but your not going through it alone, we're all with you along with your family and we'll all get through this, please try and stay strong take care Justin x

Hi loriAnna Thank you for your kind words, I hope you get some really good news next week with your results, I know this is a hard time at the moment but try and stay positive and strong,all the best Take care Justin x

Hi Welcome here this is a great community and very supportive to everyone I'm sorry I can't help with any advice on what you are going through bit someone will definitely be along soon goodluck with everything Take care Justin

Hi sajid Sorry to hear your wife is having more problems I really hope they can get to the bottom of this and she can start to get better, Sorry I can't help with any advice I don't know enough about any of this cancer stuff only how hard it is to go through it All the best Take care Justin