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Justin1970

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Posts posted by Justin1970

    Newly diagnosed with Squamous Cell Lung cancer

    in INTRODUCE YOURSELF!

    Posted

    Hi Mark 

    Welcome to the forum I'm really sorry you have to be here though, this lung cancer journey is tough but you do need to stay positive even though its hard to, I worry about my family more so than the actual dying part of this situation and it hurts me to see them so sad,

    The treatments are a lot better today and gives us all a fighting chance, I think your right to get a second opinion but get the treatment started as soon as you can and definitely get the brain scan done,

    All the best and goodluck Justin 

    New here

    in INTRODUCE YOURSELF!

    Posted

    Hi mat 

    Sorry you find yourself here, it sounds like a very rough journey your on,I haven't had surgery for the lung cancer but I have had some failed treatments so can sympathise with your fears try to stay as strong and positive as you can,I'm sure someone will come along on here with some answers, 

    All the best Take care Justin 

    Mri scan

    in MEMBER UPDATES

    Posted

    Hi everyone 

    I did promise i would keep you all posted it's 3.15am here in the UK and I can't sleep but nothing I'm not used to now lol,

    So I had the first treatment done yesterday and it was alright nothing to worry about to be honest unless your claustrophobic then I would be difficult, I wasn't long in the machine had to have a few scans before the treatment started but I would say all in all approximately 15 minutes, I have another session today at 4.30pm and 3 more next week then I guess the side effects will start, but I'm glad I went through with it even if don't have much faith in it working atleast I tried 

    Hope your all well Take care Justin x 

    Mri scan

    in MEMBER UPDATES

    Posted

    Thank you for all your kind messages and support,

    I did have some seizure activity yesterday but it passed fairly quickly, I'm back on the dexamethasone 8mg per day and start the radiotherapy treatment today for 5 days I think it's only 7 minutes per session of radiotherapy I'm not sure why it seems such a low amount of time, 

    I know you are all going through the same thoughts as I am I just didn't want to let everyone down but I will keep you all updated I promise, 

    Thanks again to everyone take care Justin x 

    Mri scan

    in MEMBER UPDATES

    Posted

    Thanks for your messages 

    I'm just a bit down about it all now that's all, it does seem to be one thing after another because nothing worked, I will ring the cancer team today about the seizure activity on Saturday and hopefully they will give me a higher dose of the steroids to stop it I haven't had any further problems so far, 

    I'll get this radiotherapy out of the way and try and get the results of the chest scan quicker, I won't give up fighting and really appreciate the support rom you all thanks again and take care Justin x 

    Christine

    in GENERAL

    Posted

    Hi Christine 

    I'm glad you found this forum and welcome,I'm sorry to hear about your mum and what you are all going through, please do not give up all hope I'm sure there is something they can do to help her

    I had a similar experience with my cancer unfortunately it had spread to my brain so in March last year I had gamma knife radiosurgery done which didn't work then I had brain surgery in October that didn't work and Thursday I start whole brain radiotherapy treatment because they think it has spread to other parts of the brain lining i had a ct scan last week of my chest and abdomen because they think it my have spread in there aswell sadly if wants to spread quickly it seems like it really will, I can't have immunotherapy so can't tell you anything about that sorry, I really am sorry to read your message I know how you are all feeling and really hope you get some good answers all the best Take care Justin x 

    Mri scan

    in MEMBER UPDATES

    Posted

    Hi everyone 

    Just an update, I had another seizure yesterday so obviously the brain mets, fluid or the swelling is getting worse, my right side mobility is worse again and my right arm and hand is swollen possibly water retention from the dexamethasone, I start the wbrt on Thursday but I really have doubts about the effectiveness of it and can't really see the point in going through it just to be let down again by another treatment but the alternative is to just give up, it really is a nightmare situation to be in,

    I want to be positive about it all but can't seem to allow myself to be,

    I may go a bit quiet on the forum for a while because I don't want to bring everyone else down with me it's so sad to see my family like this and I know how hard it is for them, hopefully i won't have anymore seizures before the treatment starts and this time it will work, I get the ct scan results of my chest on the 16th February so a bit more anxiety,hope your all well 

    Take care Justin 

    Scan frequency already droppef

    in MEMBER UPDATES

    Posted

    Hi lily 

    I had radiotherapy and chemotherapy to my lung and lymph nodes I couldn't have surgery 

    I had the first ct scan after treatment at 3 months and then it jumped to 6 months scans because it was stable and they were really happy with the results, 

    The brain mri was done in early September but didn't detect anything, had they done another one when I started treatment it may have been found, I only had another MRI scan when I had the seizure last February, 

    I was told it was normal to do 6 months scans after brain mets and gamma knife because of fluid and swelling,but after the surgery I was told it would be every 3 months for a year 

    I think they should do scans every 3 months for the first year regardless of how good the results are take care Justin x 

     

    Scan frequency already droppef

    in MEMBER UPDATES

    Posted

    Hi lily 

    I agree with you 6 months is to long to wait my oncologist did the same to me with my lung cancer and brain mets, now after the brain met problem they changed there mind about the lung scan and moved it forward and I had it done this week,

    I was told the same about the risks involved of to much radiation I'm sure they know what is best so try not to worry atleast you have a bit longer between the scans to enjoy life, if you feel like something isn't right just tell them and they will have to do a scan sooner

    take care Justin x 

     

    Mri scan

    in MEMBER UPDATES

    Posted

    Hi Kamoto,

    Thankyou for your message and prayers,

    Hi Karen,

    Thankyou, It really does seem to be one thing after another,I really do hope that this treatment will work it is strange how we find the strength to keep fighting after all the setbacks and failures, hopefully the chest scan will be good and I won't need anymore chemotherapy for a while, luckily I can still take bonnie out for a walk I really look forward to that,

    I hope your well take care Justin x 

    Mri scan

    in MEMBER UPDATES

    Posted

    Hi lily and pam

    I've had the scan and the mask fitting done this morning there was really nothing to it it wasn't even uncomfortable, the radiographer said that I won't lose all my hair either and that I didn't have to cut my beard,I start the treatment next Thursday till the following Wednesday excluding weekend, so all in all quite a good day seeing I was worried sick about it all 

    take care Justin x 

    Mri scan

    in MEMBER UPDATES

    Posted

    Hi lily 

    Thank you I had the ct scan done today for the chest abdomen and pelvis so won't get results for atleast a couple of weeks, tomorrow is scan of the brain again and face mask fitting,i am worried about having the mask made my friend had it done and he said it was a really strange thing, they said my hair will start falling out in a couple of weeks I'm absolutely dreading that but have bought a new hat ready i can't believe i got through all the chemotherapy without losing my hair and now i will,I'm still not sure all this is worth doing but I know if I don't it's like i have just given up on everyone and everything I've fought for up until this point, I know everyone on here is going or gone through similar things but I really have had enough of cancer now it really is relentless and changes your whole life, I will definitely update you all,

    Thanks again for your message hope you're well take care Justin x 

    Mri scan

    in MEMBER UPDATES

    Posted

    Thank you everyone for your support and kind messages,

    hi catlady i did have a meeting with the oncologist on Thursday and that's when she told me the tumor has grown back and the swelling and fluid are still there and that it has spread to the lining of the brain it's right where the surgery was done, I can't have immunotherapy because of the pdl1, I have a ct scan on Tuesday to see if there is anything else going on in my body which has caused it to spread in my head more.

    Hi lily I know what you mean about constantly thinking about it and the bad luck of it all, I have had enough of feeling like this now but I do intend to keep fighting it, I know I'm not going to get old as such but I'm not ready to leave yet and hopefully this treatment is going to make some difference so I have as much time with everyone as possible, I hate the pain my family is going through and it is hard to stay strong and positive but I know we all have to, I have had a good life really and have a loving family so shouldn't complain to much especially when reading of others who are a lot younger than me and going through worse.

    All the best Take care Justin x 

     

    Mri scan

    in MEMBER UPDATES

    Posted

    Hi 

    The neurological hospital I'm under is one of the best in the country we don't have many to choose from, unfortunately I think my cancer is to aggressive and keeps coming back hopefully this treatment will keep it at bay, 

    My oncology team at my original cancer hospital have been a lot different and more on the ball since we said something to them and they are getting things done, waiting 2 weeks for results is normal practice here in the UK, it would be nice to get some good news from all this now,I am a bit tired of fighting it all the time it really is relentless but I do get to spend time with the ones I love so a bit more treatment is worth doing, I'm sure I haven't got decades left but even a few years would nice, hope your well take care Justin 

    Mri scan

    in MEMBER UPDATES

    Posted

    Thank you to everyone for the messages, it's not as easy to change hospitals as you would think, I don't want to get lost in the system or have to wait to have the treatment done, I had a phone call today from radiotherapy department that a scan and mask fitting will be done next Wednesday so they are definitely getting on with it quickly, it will be 5 days of treatment, I don't know much about whole brain radiotherapy or if it's any good but I guess it's worth a try, I'm not overly happy about losing my hair either but I'm sure because I'm male they think I should just accept it does anyone know if I will lose all of it or just some of it,

    I just hope the scan on Tuesday of my chest abdomen and pelvis are still stable so I don't have to do any more chemotherapy, has anyone got any ideas how to reduce the swelling in my face I'm sure it's the dexamethasone steroids or could it be water retention 

    Hope your all well Take care Justin 

    Mri scan

    in MEMBER UPDATES

    Posted

    Hi everyone 

    Just an update I got the results from the brain mri scan today it wasn't what we were hoping for but I didn't think it was going to be honest, the tumor they removed 8 weeks ago has grown back to the same size it was and unfortunately it has spread across the lining of the brain so they have told me that I  can have whole brain radiotherapy, I don't really know if it's worth doing if there's no point, they said I will lose my hair and can't cure me but could keep it at bay, the oncologist said they think it may have spread in my chest and will have more chemotherapy if it has, 

    This journey is a rough one but its not worth giving in to it without fighting for till the end, hope everyone is well 

    All the best Take care Justin 

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