Lisa Haines Posted March 7, 2022 Share Posted March 7, 2022 Justin -- I posted an update on the thread that your daughter started about Lung Cancer and Brain Mets. I hope it will help to inspire you! I'm now close to being a 7 year survivor of Stage IV Lung Cancer that all started with a brain tumor! Best wishes to you! You can read my response here - Cody foote, Izzy, catlady91 and 2 others 5 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 8, 2022 Author Share Posted March 8, 2022 Thank you Lisa I did read your message it really does help to read success stories but I am so down at the moment I can't seem to focus straight, cody is actually my youngest son who messaged you I know how much this is hurting him but he's being so brave but it is tearing me to pieces knowing what everyone is going through x Cody foote, Lisa Haines, Izzy and 2 others 4 1 Quote Link to comment Share on other sites More sharing options...
catlady91 Posted March 8, 2022 Share Posted March 8, 2022 There are many success stories out there. Don't lose hope Justin. Lung cancer survival is improving all the time and there are so many new treatments. I remember you saying previously that one of the doctors spoke to you about targeted therapy before the mets were diagnosed. Do you know if you are eligible for targeted therapy or immunotherapy? Cody foote, Izzy and LouT 3 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 8, 2022 Author Share Posted March 8, 2022 I know your right I have lost hope I have to admit I wish I could get some strength from somewhere, survival seems almost impossible achieve, they did say there is something they could do if it was needed in the future but I'm not 100% sure if it's immunotherapy I have kras g13c mutation many thanks Justin Cody foote, Izzy and LouT 3 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 9, 2022 Author Share Posted March 9, 2022 I have a ct scan this evening to see if any other cancer has spread or is in my body and Bristol are contacting me next week regarding the gamma knife radiosurgery so hopefully they will start the treatment soon, nerves are absolutely shot I just wish I could find the strength to support my family and reassure them, I feel absolutely useless and selfish as if I've given up already has anyone any experience with this many thanks in advance Justin RJN, Cody foote, LouT and 3 others 6 Quote Link to comment Share on other sites More sharing options...
catlady91 Posted March 9, 2022 Share Posted March 9, 2022 Fingers crossed Justin 🤞🤞. LouT and Izzy 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 9, 2022 Author Share Posted March 9, 2022 Thank you x Cody foote, LouT and Izzy 3 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 10, 2022 Author Share Posted March 10, 2022 Hi I had the ct scan done last night on chest abdomen and pelvis with contrast dye the waiting for results is just horrendous they said could take upto ten days, I have a video consultation next Tuesday regarding the gamma knife radiosurgery but they said about treatment options so not sure what that means, I don't know if anyone on here understands the survival stats online as everyone I look it comes out around 6 months even with gamma knife but yet you read all these great stories of success it makes no sense to me and find it difficult to get past the bad LouT, Cody foote and Izzy 3 Quote Link to comment Share on other sites More sharing options...
catlady91 Posted March 10, 2022 Share Posted March 10, 2022 45 minutes ago, Justin1970 said: Hi I had the ct scan done last night on chest abdomen and pelvis with contrast dye the waiting for results is just horrendous they said could take upto ten days, I have a video consultation next Tuesday regarding the gamma knife radiosurgery but they said about treatment options so not sure what that means, I don't know if anyone on here understands the survival stats online as everyone I look it comes out around 6 months even with gamma knife but yet you read all these great stories of success it makes no sense to me and find it difficult to get past the bad Don't trust everything that you read online. Most of the articles are outdated. Online it says that stage IIIB lung cancer isn't curable yet my mum was given curative intent treatment! A lot of the articles online are from several years ago and don't take into account new treatments. Survival rates are improving all the time. I would look at more updated and recent studies that show the results of new treatments and the results are very promising with many people living longer. New treatments have been a game changer and have contributed to increased survival. There are a lot of positive stories out there. If you give me your email, I can send you some. Cody foote, Izzy, RJN and 1 other 4 Quote Link to comment Share on other sites More sharing options...
LouT Posted March 10, 2022 Share Posted March 10, 2022 Justin, Catlady91 is spot on. Stop looking at survival stats. Lots of folks here have had treatment for brain mets and are doing well. Scanziety is a real thing and we all suffer from it so you are not alone. Ten days is a long time, but I can't speak for the medical system in the UK. Here in the US most of us get our scans within a day or so. We are all interested in living...that is our goal. We want to live to enjoy our family, friends and the beauty of life. Yes you're going through a lot right now, but take some time to enjoy those around you...do something fun...find a reason to smile, perhaps even laugh. You will get through this. Lou Izzy, Cody foote, WalkingHorse and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 10, 2022 Author Share Posted March 10, 2022 Hi thank you for the replies my email address is jftennessee@hotmail.co.uk I know I need to stop looking at the stats but it seems pointless doing gamma knife radiosurgery if the end result is only approx 6 months why would they even bother, I know the oncologist told me he wasn't sending me home to get my affairs in order so why do I feel like I should be it does feel like I have given up all hope of fighting or beating this and I feel I have let my family down by being this way, I talk to them all and tell them how much I love them constantly because I'm afraid that soon I won't be able to, I keep wishing It was over now so the pain of losing them will stop but the other part of me wants to be here with them for as long as possible, my wife is here with me everyday and is my absolute rock,soulmate and best friend I couldn't or wouldn't want this any other way I've loved her for such a long time since we were very young and I feel so sorry for her having to go through this, I have four grown up boys who I absolutely adore and am so proud of my youngest is only 19 but like a best friend and I worry how he will cope when I'm gone as we do such a lot together, all the boys are like my best friends and we have all been close forever I hate what this is doing to everyone x Cody foote and Izzy 2 Quote Link to comment Share on other sites More sharing options...
LouT Posted March 10, 2022 Share Posted March 10, 2022 Justin, Your list tells me that you have a lot to be grateful for. Let the doctors take care of frying the mets and you enjoy that loving family. Enjoy it whether you believe it is for six months or six years. Look at results and not just fears. We all have them, but you can get through this and you will. Lou RJN, Cody foote, WalkingHorse and 2 others 5 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 10, 2022 Author Share Posted March 10, 2022 Thank you for the reply lou, I have spoken to the cancer nurse today who has tried reassuring me that I'm going to be treated because I have every chance of recovery and that if there was no hope they would not even be considering gamma knife radiosurgery, she also told me the steroids I am taking are causing my hyper sensitive thoughts and causing the low mood and depression I'm hoping it will start to get better soon and I feel ready to start fighting this, I really do appreciate the replies from everyone on here the site definitely helps me Take care Justin RJN, Izzy, catlady91 and 2 others 5 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 10, 2022 Author Share Posted March 10, 2022 The pain I feel for my family is so intense it's hard to get past it, my parents and my sister must be in pieces but are being so supportive and strong for me and I love them so much and my 2 beautiful nieces, my boys and wife have been fantastic it just seems to be me who's fell apart, I do feel better for talking to the nurse today and hope I get back on track soon many thanks Justin WalkingHorse, catlady91, LouT and 2 others 4 1 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted March 11, 2022 Share Posted March 11, 2022 Hi Justin, Here are some suggestions: 1. Stop reading those damned internet statistics (this is not the first time you've heard this suggestion, right?).You know they're out of date. 2. Instead, listen to this: The Median isn't the Message, by Stephen J Gould. He was a scientist and a cancer survivor who understood what statistics can and can't tell us. 3. Get a grip and start enjoying your family! Lou is right on this! Stop wasting your one rare and precious life in fear. You'll be doing your family as well as yourself a big favor. 4. If you haven't already, consider cancer counseling and/or see if antidepressants are appropriate for you- I've found both of these helpful.5. 5. Know that we're here for you and vent and rant all you need to! Most, if not on his forum all, have been in the throes of hopelessness at times. Some have passed on. Those of us that are still posting are stlll here! This is proof that HOPE makes sense. My lung cancer was an early stage. However, lung cancer is my third primary cancer. My second was a rare and aggressive stage 3 gynecologic cancer with a "dismal" (my doc's word) prognosis. I continued with aggressive treatment and I've been NED for over 10 years. There were no guarantees for me, but I'm still kicking. Hang in there, Justin. You can do this! Tom Galli, RJN, Cody foote and 6 others 9 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 11, 2022 Author Share Posted March 11, 2022 Thank you for the reply bridgeto I know you are right and I need to start finding the will to fight this, I think knowing that the tablets are not helping my thoughts has made me realise I haven't completely given up, waiting for the ct scan results is bit of a nightmare but I did only have one 6 weeks ago which showed all good results so hopefully if anything it's small I really am trying to be strong for my family many thanks Justin LouT, Lisa Haines, Cody foote and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Lisa Haines Posted March 14, 2022 Share Posted March 14, 2022 Justin - When I was diagnosed at Stage IV with a brain met back in 2015 - my chances of living just ONE year were almost zero. When I had significant progression my first year I came very close to giving up on any further treament and actually originally "declined" immunotherapy because it was so new and I was so afraid of going though more treatments and side effects. The day I went in to tell my Oncologist I had decided against it, she sat down and explained it to me in a way that made it much easier to understand. She felt very confident it would work for me and honestly was the reason I changed my mind. I can tell you how many times I've thanked her and I credit her and that treatment with saving my life. I know it's so challenging to not feel down and defeated, but I HOPE you will take one day, one minute at a time! We have come so far with treaments since then and there are many people living long lives. As you know I'm very close to 7 years and honestly NEVER ever imagined it would be possible. I sincerely HOPE we can ALL inspire you to FIGHT this monster and do not give in to it. PS: Do not believe all the stats you read online, MANY or very outdated and do not include the most currently treatment options. I WISH YOU the very best! ~ Lissa BridgetO, WalkingHorse, LouT and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 14, 2022 Author Share Posted March 14, 2022 Thank you lissa it really does help when people message with encouragement and fantastic stories of survivors, I really am struggling at the moment to even bother fighting this anymore it just seems so pointless but on the side of the coin I want to stay with my family for as long as I can, I have a meeting Tomorrow to arrange the gamma knife radiosurgery and results of last week's ct scan to see if its spread anywhere else, nervous is an understatement I'm sure I will get the will to fight but the tablets I'm on don't seem to be helping my mental state but hopefully that will stop soon , thank you so much for the reply it really does mean a lot Take care Justin x Izzy, LouT and RJN 3 Quote Link to comment Share on other sites More sharing options...
RJN Posted March 14, 2022 Share Posted March 14, 2022 Justin, Just as an aside, but it seems to be quite important in this case. Most antidepressants take 5-7 weeks to kick in. Both my parents have suffered from clinical depression and getting out from under it is a struggle - and that is without a cancer diagnosis. I know it sounds naff, but keep your head above water. We are here with you all the way and will be with you in spirit tomorrow. X LouT and Izzy 2 Quote Link to comment Share on other sites More sharing options...
catlady91 Posted March 14, 2022 Share Posted March 14, 2022 Justin please don't give up the fight! Attitude is everything. Strength of mind and body and positivity is important. You are you, not a statistic. If someone tells you that you're a failure and you can't do something, do you listen to them? No! Never let anyone or anything hold you back and take your fight and strength away. After each knock pick yourself up and think, I can do this. There are lots of long term stage 4 survivors here who are not only surviving but thriving. Treatment has come a long way and new treatments are being discovered every day. Chin up! You can do this. I sent you an email by the way. LouT and Izzy 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 14, 2022 Author Share Posted March 14, 2022 Thank you rikke I hope I get some good news tomorrow I certainly could use a bit now, I really do want to fight this for my family and myself it's just real hard at the moment to focus on it I'm glad I know it's the medication mostly and not just me, I hope your feeling well now thank you again for your messages and support Take care Justin x LouT and Izzy 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 14, 2022 Author Share Posted March 14, 2022 Thank you catlady I know you are all right I really do I'm just struggling with it all at the moment I'm sure I will get stronger and fight for everyone I definitely feel a bit better today and hopefully after the meeting tomorrow I'll have some good news, thank you for your messages and support it really does help Take care Justin x LouT, catlady91 and Izzy 3 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 15, 2022 Author Share Posted March 15, 2022 Hi everyone Had the meeting with the gamma knife team the treatment is being done next Thursday they seem confident of being able to sort it as there only small, still waiting for the results of last week's ct scan hopefully some good news, Thanks Justin WalkingHorse, Izzy, RJN and 1 other 4 Quote Link to comment Share on other sites More sharing options...
LouT Posted March 15, 2022 Share Posted March 15, 2022 Justin, Keep looking forward to the treatment where those little buggers will be fried and gone. Lou Izzy 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 15, 2022 Author Share Posted March 15, 2022 Thanks lou I really do hope it works but I guess like anything there's no guarantees, they did say its the best treatment for it so fingers crossed Thanks Justin Izzy and LouT 2 Quote Link to comment Share on other sites More sharing options...
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