Justin1970 Posted January 9, 2023 Author Share Posted January 9, 2023 Hi pam and Karen and everyone else, Thankyou for the kind messages, I'm going for the results of my brain mri since the surgery I am so worried that its already coming back and that's why everytime I reduced the amount of dexamethasone the feeling and coordination goes in my right side, why my body cannot make the cortisol hormone itself is beyond me,I also have a body scan on the 17th January to see what the chest is doing or if that is still behaving, my breathing is worse but I'm hoping that is just lack of doing anything like I was, so all in all a crappy few weeks ahead of more worry, I'm just hoping everything will be good with the brain tumor i can come off the steroids and the chest is still stable so I can just do the normal stuff in life and do some work on the cars, even that would take my mind of things, We are still going through some family issues with my wife's sister and father that is stressing all of us out and I honestly think it's hampering my recovery because it is so stressful, my wife and children are stressed about it and it seems to be all we talk about, I am starting to think that the alternative to living like this is definitely better but don't want my family to have to deal with everything by themselves, it's approximately 4am here in the UK the time in which I find myself waking up for the 2nd or 3rd of the night,the sleeping is terrible and unfortunately I find myself on here rambling and feeling sorry for myself, please forgive my vented rants I don't mean to, I would much rather help people than scare them All the best Take care Justin x Izzy, LouT, Cody foote and 2 others 5 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted January 9, 2023 Share Posted January 9, 2023 Are the brain MRI results out today Justin? Please try not to overthink other people's problems, you have your own problems that need your focus and attention. I know exactly how it feels when there is tension in extended family but try to ignore and focus on your own health. Other family members can deal with their own problems while you focus on recuperating I also know the waking up multiple times at night, hopefully it is just the jitters and you get some good news soon to enable you to sleep better. Keep us posted please. LouT, Izzy and Justin1970 2 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted January 9, 2023 Author Share Posted January 9, 2023 Hi lily I get the results on Thursday I don't think it works the same as canada or USA I can't access them, we are going to concentrate on our problems not everyone else's from now on this is stressful enough. I hope it is some good news and no other problems with brain mets I can't take much more bad luck lol, it is horrible not being able to sleep properly isn't it. I hope you and your family are all well, All the best Take care Justin x LilyMir, Cody foote, Izzy and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Izzy Posted January 9, 2023 Share Posted January 9, 2023 Jus, I know this is tough for you and you don't deserve all this added hassle and stress with your in-laws, they are not worth wasting your breath on, we have much more to focus on in life than those two losers so don't give them another thought. It's so hard waiting for the results all the time but we can deal with this as a family xxx You are all I worry and care about and we will win this battle together, hang in there we've got this xxx love you very very much xx love mum xxx LouT, Cody foote and Justin1970 2 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted January 10, 2023 Author Share Posted January 10, 2023 Thanks mum I know how hard it is for everyone aswell waiting for the results of scans and seeing me have these relapses all the time, I won't ever give up fighting this, it's just difficult when after every procedure you don't seem to get better as you know I've never liked being ill and having a cold for a week was the end of the world for me lol so being ill for 18 months is not great lol, As for the added stress of family problems we have decided that we need to concentrate on us getting to a better place and try and stay positive and strong and get through this cancer journey, Try not to worry to much I shouldn't write messages when I'm awake in the middle of the night and at my worse, as soon as I can stop the steroids and get back to doing the things I enjoy and working again I'm sure i will feel a lot better about everything, Love you loads always jus xxx LouT, Cody foote and Izzy 2 1 Quote Link to comment Share on other sites More sharing options...
Pstar Posted January 10, 2023 Share Posted January 10, 2023 I am hoping for good news on Thursday for you Justin. I go on Jan 20 for brain mri and ct scan of lungs/abdomen/pelvis. I understand your sleep issues..I wake up multiple times during the night. You need to only focus on yourself at this time. Praying for you. Pam Izzy, Justin1970 and LouT 1 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted January 11, 2023 Author Share Posted January 11, 2023 Hi pam Thank you for your message, I hope it is but I'm not convinced it will be good news, I'm on 2mg of dexamethasone per day but my right side mobility is not great, they did say the swelling and fluid could take a while to go but it's been 2 months now since surgery and as soon as I drop the steroids down my mobility suffers, I'm just hoping that everything is alright and the tumor hasn't grown back, I could do with a break from it all now lol, I also have a ct scan of lungs, abdomen and pelvis next week 17th January, The lack of sleeping was driving me mad but seems to be a bit better at the moment, Goodluck with your scan and I hope you manage to sort out your lack of sleep soon, i hope your feeling well in general and try not to worry to much about your scan. all the best Take care Justin x Izzy, Cody foote and LouT 1 2 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted January 11, 2023 Share Posted January 11, 2023 Hi @Justin1970 , did you ask for a sleeping pill? I fought so hard not to take them but they were the only reason I got some sleep while on chemo! Maybe ask for some Ativan too, it takes the edge off a little when things are especially tough so one is not hyper anxious all the time. Fingers and toes crossed you get some good news soon! LouT and Justin1970 1 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted January 11, 2023 Author Share Posted January 11, 2023 Hi lily I am on a sleeping pill I think it's called zopiclone I take 2 at night but reckon I've got used to them now, i know they used to work because once my wife left me to take my tablets while she had a lay in and I took all the night time tablets in the morning and slept all day lol, thank you I will ask about the ativan, Thanks so much for your support it would be nice to get some good news and start the year on a good footing, I hope you see still feeling better and your family is well, all the best Take care Justin x LouT, Cody foote and Izzy 3 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted January 12, 2023 Author Share Posted January 12, 2023 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 Tom Galli, Cody foote, Pstar and 4 others 7 Quote Link to comment Share on other sites More sharing options...
Izzy Posted January 12, 2023 Share Posted January 12, 2023 Im devastated at Jus's news today, he's been fighting so hard and it's like a kick in the teeth. We are a strong family and will fight this together. Your support is most appreciated as we need all the help and support we can get at this time in our lives. He's a strong lad and if anyone can fight this he can. Where there's life there's hope so all the love ❤️ in the world is with you Jus cause we love you so very very much, it's gonna be a rough ride but we'll make it xx I love you to the moon and back son xx all my love mum xxxx JHP, Tom Galli, Cody foote and 3 others 2 1 3 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted January 12, 2023 Share Posted January 12, 2023 I am so very sad reading your update Justin. Lung cancer is a beast but please do not give up. Many had multiple recurrences and overcame. At this point I think it is really worth fighting for care at another cancer treatment location. If the cancer returned to the same location, it usually means the surgeon left things behind, but have they not checked the margins to see if they were negative or not? Have they done biomarker testing on the excised tumour? This on the heals of them not getting the old tumour by gamma knife, and the serious delays each time you have followups makes me doubt their competency. I am worried that the skill at your cancer centre is not the best so if there is a possibility to go to a bigger hospital with more skilled doctors, this may be the time to fight for that ASAP. Please do not give up, there is still hope, including chemo and radiation to keep things at least stable. Hugs to you and Izzy from Vancouver! Justin1970, Tom Galli, Scruboak and 4 others 5 2 Quote Link to comment Share on other sites More sharing options...
LouT Posted January 13, 2023 Share Posted January 13, 2023 Justin, So sorry to hear this news. You've been putting up a great fight so far and I believe you can continue. Even if they can't cure it perhaps it could be treated like a chronic illness (like many on this forum live with). Just know that we are all with you and you are in our thoughts and prayers. Stay strong and take advantage of every tool they have for you. Your mom smartly said, "where there is life there is hope" and I believe that with all my heart. None of us know the final outcomes in our lives, but we can always have hope and that is a better way to live. Lou LilyMir, Izzy, Pstar and 4 others 6 1 Quote Link to comment Share on other sites More sharing options...
Pstar Posted January 13, 2023 Share Posted January 13, 2023 Oh Justin…I am so sorry to hear of this news. Hopefully the whole brain radiation will keep the tumor in check. Do not give up hope. You have your amazing family to help you fight this set back. Please stay strong. Sending prayers and positive thoughts your way. Pam Tom Galli, Izzy, LouT and 3 others 5 1 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted January 13, 2023 Share Posted January 13, 2023 Oh, Justin, I was so sorry to read this news. I know it's hard to hear, but in the States, it's very common to go for another opinion when there's progression. Sometimes we have a big fight with insurance to have that happen. It sounds similar to your system in that way. Whatever you decide, I believe you have the courage and strength to proceed. Please keep us posted. Izzy, Scruboak, Justin1970 and 1 other 3 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted January 14, 2023 Author Share Posted January 14, 2023 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 LilyMir, Cody foote, LouT and 1 other 1 3 Quote Link to comment Share on other sites More sharing options...
JHP Posted January 14, 2023 Share Posted January 14, 2023 Justin, I am not sure how UK hospitals work, but after going through three hospitals here in the US with varying degrees of quality, my opinion is that the best possible hospital your insurance covers and that isn't too prohibitive time-wise is something worth going after. Especially for surgery. When I was wondering if we should accept a sooner appointment time for dad at the worse local hospital (that transferred him away initially) or go to a specialized center with a cancer center designation to begin his oncological care, someone from another board told me she got better care at a specialized facility after receiving poor care at the local hospital and she would advise everyone to switch if they could. The choice for dad came down to a good cancer center or a top cancer center hospital. Fortunately, the latter had an earlier appointment. Regular non-designated hospitals in the US rankings mainly score below average on how their patients fare compared to to specialized cancer centers. Waiting weeks to go to a better specialized place might not be worth the delay in urgent situations, but for long term care, it's definitely something worth looking into. Just some of my observations...when my dad was first diagnosed via scans and they didn't know it was NSCLC, the local hospital said it could be sclc but only planned on tentatively biopsying it a week later. Btw, MD Anderson #1 hospital in the US can do next day treatments for SCLC. Then they held onto him for a week doing absolutely nothing before deciding they didn't have the specialists needed and transferred him to a different hospital for what in hindsight was a non-urgent matter. This delayed his oncological care by three weeks after diagnosis. At the top hospital he's currently at right now, their website says that SCLC diagnoses get seen same day. They do blood biopsies instead of tissue which means a 1 week vs a 2-3 week turnaround, plus blood biopsies are supposedly superior at checking for biomarkers. There are always oncologists, pharmacists, and nurses available 24/7 here, while at the other two hospitals, I was able to speak to one resident briefly per hospital after several days of waiting. He's been able to get same day CT and MRI scans at the doctor's request. While researching each place's equipment, I realized that the local hospital actually had the least amount of radiation machine types at their disposal. In the SCLC material, they presented this miraculous case of a lifelong smoker granny who got whole brain radiation after many reoccurances and still had NED decades later. They are coming out with new advances all the time. Hang in there Justin. Whatever you decide, best wishes. Izzy, LouT, Justin1970 and 4 others 5 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted January 14, 2023 Author Share Posted January 14, 2023 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 LilyMir, JHP, Tom Galli and 5 others 8 Quote Link to comment Share on other sites More sharing options...
RJN Posted January 14, 2023 Share Posted January 14, 2023 Oh gosh Justin, I am so very sorry to hear your News, and that you now have another giant hurdle to go through. But I think you must keep fighting! Sending lots of good wishes and positive energy to you, Rikke Justin1970, Izzy and LouT 1 2 Quote Link to comment Share on other sites More sharing options...
catlady91 Posted January 14, 2023 Share Posted January 14, 2023 I'm so sorry to hear about your setback Justin. My heart goes out to you. Is it possible that it could be swelling? When my mum initially started immunotherapy her "tumour" was the size it was when she was first diagnosed but it was inflammation from immunotherapy and no actual tumour. I don't know if you've tried immunotherapy but maybe it's swelling after surgery. The tumor could have grown back a bit but not to it's original size. I hope that radiotherapy will keep things stable. It's good that you are being offered different treatment options. Sometimes it can be trial and error with cancer treatment. Perhaps immunotherapy or clinical trials could be an option. I can imagine what a difficult time you and your family are going through. Will you have a meeting with an oncologist? Perhaps they can shed more light on the situation. My thoughts are with you xxx LouT, LilyMir, Izzy and 2 others 3 2 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted January 14, 2023 Share Posted January 14, 2023 @Justin1970 I don't think about living for decades anymore, probably no one should at this age of pandemics, societal mayhem and public sudden deaths. Living the moment is what matters but of course while doing our best to stay in the game longer. I felt so upset thinking about this for months, lamenting my terrible luck, especially that I feel our generation is being short changed: we are dying younger, having plagues, witnessing so much extreme weather and life is becoming so expensive we have to live like sardines in a can (at least where I live). I would have loved to live into my 90s like my grandpa or father in law, or even my 70s, but I am pretty sure it is not going to happen. However, I pray and remain hopeful I can stay around to raise my kid into an amazing young man. Surviving a few years may mean getting to a point where science have found a cancer cure. Try to think like that and fight if you can. We are with you! Justin1970, EMandM, RJN and 4 others 5 1 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted January 15, 2023 Author Share Posted January 15, 2023 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 Izzy, RJN, Cody foote and 1 other 2 2 Quote Link to comment Share on other sites More sharing options...
RJN Posted January 15, 2023 Share Posted January 15, 2023 Just to add to Lily’s comment: the stated aim of my medical team is to keep me alive and well till there is a cure. Even very jaded oncologists are now expressing some hope that this could happen, as they see more stage people doing better for longer on the new treatments. I am with you on not expecting to get to 90, as the treatments in themselves are tough on the body (I feel like I have aged 10 years in the last 2), but it is worth hanging in there as new stuff is coming out constantly, including many trials for low-PDL non-mutation LC. X Justin1970, LouT, Tom Galli and 1 other 2 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted January 15, 2023 Author Share Posted January 15, 2023 Thanks rikke I hope this treatment works I'm running out of options now, hopefully it hasn't spread anywhere else so I don't have to have more chemotherapy, I feel 10 years older aswell lol, I know it's worth hanging in there you never know what is around the corner, hope your well take care Justin x catlady91, Cody foote, LouT and 3 others 6 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted January 17, 2023 Share Posted January 17, 2023 Hi @Justin1970 Just wishing you the best for the 2 scans coming up this week (right?) Stay strong and hope you update us with good news soon! Justin1970 1 Quote Link to comment Share on other sites More sharing options...
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