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catlady91 last won the day on September 24 2023
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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.
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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.
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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.
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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
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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
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We're rooting for you! A lung cancer diagnosis is a shock to the system but it's not a death sentence anymore! Advances in treatment have come a long way and are getting even better! Being in good health other than having lung cancer certainly helps. It's great that you can walk three miles every day- I'm 30 and don't walk that far everyday! Stay positive and look to the future!
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Hi Doug, I can completely understand your fears, but fear not as lung cancer treatment has come a long way! First of all that's amazing that before the advances in treatment your treatment was so successful and the cancer has stayed away for that long! I'm confused about what happened nin 2017. Did the cancer return and you had treatment or was it a nodule that wasn't cancer? Even so you've achieved long lasting NED! Surgery isn't an option for many with lung cancer but it doesn't mean that other treatments aren't effective or can't be successful. Surgery doesn't always equal a cure anyway. There's many choices of immunotherapies and targeted therapies and for those who can't have anymore radiation, there's a special type of treatment that can be used. I think it's called stereotactic radiation. You doctor doesn't seem overly worried so try to stay calm. I know it's easier said than done but you've done amazingly well. I view you as a success story. Even if the cancer were to return, you can beat it again. Keep us updated. Monica
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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.
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Hi Emily, sorry for my late response. I've been very unwell and haven't really been active on here. Has your mum started treatment yet? My mum's side effects weren't immediate with immunotherapy, they kind of accumulated and built up unlike with chemo where side effects are pretty much instant. Side effects on cancer treatment can be tough but everyone is different and in my eyes, it's worth it if there's a chance that the treatment will be effective and kill the cancer and keep it away. Let me know if you have any other questions or if you need support. Do keep us posted on here. Monica x
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Hi Emily, Doctors don't lie and wouldn't give patients false hope. There have been so many advances in treatment for lung cancer. The specialist who diagnosed my mum said that 10/15 years ago being diagnosed with inoperable stage 3 cancer would be very bad news but nowadays things have changed and there's been a lot of advances in treatments. I'm sorry that your mom reacted badly to Keytruda and died from the bad effects Rower Michelle- immunotherapy does have a lot of side effects but for many people it can be a game changer. For a rare few immunotherapy can cause fatal side effects but it's not common. I don't want to put people off immunotherapy when it can be a life saving treatment for many. Immunotherapy is not effective for all cancers but for lung cancer it's been a game changer. My mum had durvalumab (infimzi)- another immunotherapy drug and she was very scared to have it because of side effects but I persuaded her in the end. Yes she had a lot of side effects but two years later she's cancer free (she had a scan last week- I'm hoping that she's still NED)! If the immunotherapy is too much, they can always stop it. My mum was meant to have 12 infusions but they said that 8 was enough especially as she had a lot of side effects. They also monitor you very closely when you have immunotherapy. Keep us updated and be positive ☺️
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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
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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
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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.
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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.