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catlady91 last won the day on September 24 2023

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  1. Hi Christine please don't feel guilty. Cancer is a huge shock and life changing event regardless of stage. It brings with it the same fears and emotions. Luckily advances in treatment have come so far that there are success stories of many people with stage 4 lung cancer. There's hope and treatment at every stage. Yes the higher the stage, the more the cancer has progressed but no stage is hopeless. Also the stages are used to guide treatment for example treatment for stage 1 is different from treatment for stage 3. Most people with stage 3 aren't candidates for surgery. My mum was diagnosed with stage 3B and she couldn't have surgery but she had radiotherapy, chemo and immunotherapy and she's been NED for over 2 years. She has her routine scan next week so fingers crossed that she's still NED.
  2. Sorry I'm late to this. Lung cancer with mutations is treated differently to lung cancer without mutations (pdl 1). LC with mutations tend to be treated with targeted therapies and those without mutations and who have a certain level of pdl 1 are treated with immunotherapy. I don't think that immunotherapy is effective for LC with mutations and vice versa. My mum was treated with immunotherapy as she didn't have any mutations. I'm not sure which has a better outcome - LC with mutations or without. I've tried to research it but there's not much info. The most important thing to remember is that treatment has come a long way and there's different but effective treatment for whatever type of lung cancer you have. Both immunotherapy and targeted therapy can be extremely effective. Lung cancer is no longer treated the same way as in the past which was a one size fits all treatment. Now we know that lung cancer is not one disease, but there are many diff aspects that require different treatment. Stay positive. The most important thing to remember is that there have been major advances in treatment and there are many treatment options.
  3. I also thought I'd add that's there's no clear test to see whether immunotherapy is working or not other than the cancer getting worse (excluding pseudo progression). Immunotherapy is a fairly new thing and unlike chemo and radiation it can take some time to see if it's working like it did with my mum.
  4. Hi JJFrank, Welcome! I'm so pleased to hear that you're doing well and responding so well to immunotherapy. You were diagnosed exactly the same time as my mum and she's also doing really well (touch wood she continues to do well). My mum was diagnosed with inoperable stage 3B squamous cell carcinoma in Feb 2020. She had intensive radiation and chemo followed by durvalumab (aka Infimzi) May your fantastic response to treatment continue. You are doing great! Monica xx
  5. Hi there Lilly, I would wait until you speak to your oncologist especially as a lot of reports use medical jargon that non-medical professionals don't understand. Many times I've read my mum's reports and have gotten into a panic. One doctor even put that my mum had metastatic cancer (it was confirmed by the oncologist that it was a mistake on the letter and my and that my mum is indeed stage 3 not stage 4). I read my mum's other medical letters and would research the things that I didn't understand only to get more het up, confused and panicked. Don't too much into read into the results. Unless you are a medical professional skilled in that area, you won't know what these results mean. Only your oncologist can interpret these results. Also with immunotherapy, there is something called pseudo progression. My mum was told that the cancer "returned" after around 5 or 6 months starting durvalumab but they mistook the inflammation for cancer on the PET scan. The CT scan showed nothing in my mum's lungs and further testing concluded that there was inflammation not cancer. Try not to worry and get too worked up. I know it's easier said than done. I've had my fair share of panic and fear reading medical letters. They really don't make these letters and results easy for a lay person to interpret. I would speak to your oncologist or a medical professional. Monica x
  6. Hi Kelvin, my mum was diagnosed with stage IIIB in February 2020 and over 2 years later she's still here and NED (no evidence of disease). Stage 3 and even stage 4 lung cancer isn't a death sentence anymore. Even the first consultant who saw my mum said that 10/15 years ago it would have been a very bleak scenario being diagnosed with stage IIIB lung cancer, but now treatment has come a long way. My mum had immunotherapy, one of the latest breakthrough treatments for lung cancer. More and more treatments are being developed every day. There's a lot of hope out there and absolutely every reason to stay positive.
  7. It's understandable that Justin feels depressed and deflated, but it's normal. All cancer sufferers are faced with the idea of death (even if the cancer is not terminal) and it's terrifying. My mum felt the same way. She was terrified and scared but it's just the shock and the fear. Treatment for lung cancer has come so far. There's been so much progress made. It's no longer a death sentence. Even my the doctor who diagnosed my mum said that 10/15 years ago it would have been very bad news for her and she would only be offered palliative care but now treatment has come so far. There are people with stage 4 who have been living with cancer for years and are thriving. When mum was first diagnosed I knew absolutely zero about cancer- for me it's either something that's curable or terminal. I couldn't have ever imagined that people could live with cancer. Justin has every reason to stay positive. Xx
  8. I'm so pleased to hear that you have some positive news Justin. EMandM is right that the NHS wouldn't bother spending money on treatment if they didn't think it could be successful. The fact that the doctors say that the results are way better than expected is fantastic. Good luck with the gamma knife treatment. Keep us updated x
  9. 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.
  10. 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.
  11. Fingers crossed Justin .
  12. 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?
  13. Wow this oncologist can't make up his mind. There are some doctors that are more pessimistic than others. I really didn't think that they gave prognises anymore unless someone is in a really bad way and the cancer is too advanced for treatment other than palliative. They never gave my mum a prognosis though one doctor said her cancer was incurable and her oncologist gave her treatment with curative intent. My mum had an awful oncologist before her current one who is amazing. He was so negative and didn't seem to know much about the latest treatments or clinical trials. If you're unhappy with your oncologist, switch to a new one who will do his best to get you the best treatment. I also remember I spoke to this awful McMillan nurse when my mum was first diagnosed and she said that people with stage IIIB lung cancer usually only live for six months. Well it's been 2 years and mum is NED . Our old cat was diagnosed with two brain tumors and gave his two months, three max but he lived for over three years which is like 15 years in human years!! He was an old cat- he was almost 20 when he died! My point is that no one knows how long anyone will live. It helps to be your own advocate. With my cat the vet and family members said to put him down during those 3 years but he was still happy. We only put him down because towards the end he was really suffering and we knew it was his time. Keep your chin up. Treatments have improved a lot over the past few years. Find an oncologist who believes in you and is up to date with the latest treatments.
  14. Lou is right, don't give up hope. I think that all people with cancer have thoughts of and fear of death. It's a shock but it doesn't mean death. There are so many new treatments available and there are many people who are living for years with stage 4 cancer. I follow this woman on Instagram who was diagnosed with stage 4 bowel cancer and had around 17 tumours around her body at the time of diagnosis and over 5 years later she's still alive. She almost died but she defied all odds. You mentioned that the doctor was happy with the size of them so they must think it's very treatable. I've heard that brain mets can easily be radiated. Lung cancer does commonly spread to the brain. Did you have a head CT whilst you were being diagnosed for cancer? They gave my mum a head CT on top of a PET and chest CT.
  15. Don't rely too much on what you read online. There isn't a lot of information about the advances in treatment. It's the same with survival statistics- most of them are heavily outdated and don't take into account treatment advances. How large is the brain mets?
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