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Everything posted by catlady91

  1. Amazing news!! I hope your brother gets better and manages to gain some weight. Has he seen a dietician? Dieticians can recommend supplements and meal plans to gain weight.
  2. I'm glad that you're well enough to go ahead and that the chemo is bearable. Everyone reacts differently to chemo. My mum tends to have a lot of side effects with most things. She found the immunotherapy side effects tough too but some people get few or little side effects on immuno. Mum has her scan coming up next week so I'm feeling really nervous. I think I worry more than mum about it. She's been fine health wise so pray to God she's still NED.
  3. Hi Justin, sorry to hear that your white blood cell count is low. I think it's normal that chemo depletes your body. My mum had an extremely low level of magnesium after chemo to the point that she had to be hospitalized. Luckily she pulled through. More amazingly that after all the treatment that my mum recieved, her blood results were completely normal. How are you tolerating treatment so far? It's a rough ride but stay strong. Hopefully the blood transfusion will make your body stronger and you'll be able to resume treatment. Mum found the chemo hell but the radiotherapy wasn't as bad. She still had side effects but they weren't as bad as chemo. As for the biomarkers test, maybe they already did it. In my mums papers they wrote her cancer subtype and EGRF wildfire and PDL1 80%. I had to Google what it all meant but those are the biomarkers. You mentioned that you'll be having immunotherapy so it's likely that they've already done the biomarkers. They wouldn't be able to do the immunotherapy without knowing. Best to ask your oncologist though. I find in the UK, doctors don't really explain anything to patients. My mum always writes down questions to ask when she has an appointment. Thanks for keeping us updated. I'm wishing you lots of strength. Please stay in touch and keep on updating us. Xx
  4. Please don't beat yourself up over getting lung cancer because you were a smoker. Never smokers also get lung cancer. My mum was a heavy smoker who quit 15 years ago. Even though she quit, unfortunately the damage was still done. Luckily she's currently NED and hopefully will remain NED. The best thing you can do after a lung cancer diagnosis is to quit. People with lung cancer who quit smoking have a better outlook than those who continue to smoke. Smoking can make treatment less effective and cause additional lung problems. It's important to try to improve your lung condition in order to improve your health and outlook. The doctors were surprised by my mum's excellent lung capacity so quitting has benefits. Smoking will only further damage your lungs. However please don't blame yourself. Everybody in life has vices and different coping mechanisms. You get super healthy people who never smoke, drink and are a healthy weight but get cancer. My friend's dad never smoked or drank and was a healthy weight but got pancreatic cancer. Even one of the doctor's told my mum not to blame herself and his sister in law was a health freak but died from a brain tumor. The best thing you can do is focus on treatment and take positive steps forward. A lung cancer diagnosis sucks but it's not all doom and gloom. Advances in treating lung cancer have improved massively and there are people even with stage 4 who have been living with cancer for years. What type of lung cancer do you have and what stage are you? Monica x
  5. I won't lie the treatment was tough for my mum as she had a lot of side effects and unfortunately some of them are long lasting but generally now her health is really good. However, it doesn't mean that you will have lots of side effects or will struggle with treatment. Each person is different and the oncologists wouldn't be giving you such radical treatment if they didn't think you could handle it. Unfortunately some people are too unwell, too weak and too frail for radical treatment and are given only palliative treatment. The doctors said that my mum was/still is in extremely good nick for her age. I wish you all the best with your treatment. It sounds daunting but stay positive and think that this treatment is killing the cancer. No pain, no gain. I agree that being told that the treatment is with curative intent is a lot more hopeful. The first doctor (who wasn't the oncologist- he was the lung specialist) said that my mum's cancer is treatable but not curable which was very hard and bleak news to hear but the oncologist told us that my mum's treatment is with curative intent which made us feel far more hopeful. Of course cancer that isn't curable isn't necessarily a death sentence these days. It seems in the US some doctors are of mixed opinion as to whether cancer is "curable" and some don't use the word "cure". Some people on here, even long term survivors don't like to use the word "cure". I hope you have supportive friends and family around you to help you get through treatment. And of course you always have us. Keep us posted.
  6. Hi Justin, I'm sorry to hear that the diagnosis is lung cancer but on the bright side, the treatment plan is with curative intent which is great. You're probably going to have the same treatment as my mum had. My mum had radical chemoradation followed by immunotherapy. My mum is currently NED (no evidence of disease). I agree with the others that having a treatment plan helps to take away the anxiety. Stay positive and keep us updated xx
  7. Also getting a biomarker test done is a good idea. Squamous cell which is what my mum has is almost always caused by smoking. My mum was a heavy smoker for 40 years though luckily she quit 15 years ago. Lung cancer can also be caused by passive smoking. Was your mom around people that smoked? I don't know though if squamous cell is only caused by smoking or passive smoking as well. Squamous cell doesn't have many mutations but you never know.
  8. Hi Sunny Hope I'm so sorry to hear that you're going through this. How frustrating that the doctors seem to have given up. I would definitely seek another opinion and transfer to a different doctor. I know that decisions about treatment are based on performance status (whether or not the patient can go about their daily activities with much difficulty and what other medical conditions affect their life). Your mom being on oxygen and having had pneumonia have probably played a role in the treatment decision. Maybe they feel like aggressive treatment will be too much for her to handle. I'm not a doctor though and I would definitely seek another opinion if I were you. Perhaps they can get your mom's general health better before any treatment. I do think that one radiation treatment is not enough to see change. Usually it takes many sessions to see shrinkage so I don't know why they've give up. My mum had six weeks radiotherapy and even then it shrunk by half. Luckily the tumour disappeared completely but my mum was told that the tumour keeps on shrinking after radiotherapy as well and there's a lot of inflammation which makes it look bigger. My mum was initially upset because she expected it all to be gone but the doctors reassured her that it's excellent and the tumour will keep on shrinking and after a few weeks it shrunk completely. I really hope that you can find another opinion and a doctor who doesn't give up on your mum. I live in the UK where it's much harder to get a second opinion and it's harder to change doctors (though my mum luckily managed to change doctors because she had two awful ones, but her doctor now is fantastic). In the US I hear it's common practice. Good luck and let us know how you and your mom get on. Monica xx
  9. Hi Justin, I'm from the UK as well. My mum was told she had lung cancer before they did the biopsy- it seems to be common practice in the UK. It turns out they were right anyway. As difficult it is to process a lung cancer diagnosis it's not all doom and gloom. Do not believe everything you read on the internet- the statistics are outdated and so many treatments have been approved for lung cancer over the past few years. The very first consultant told my mum that 10/15 years ago her prognosis would have been very poor but nowadays treatment has come far. My mum was diagnosed with stage 3B lung cancer in Feb 2020 and now she's currently NED (no evidence of disease). Her oncologist thinks that she's in an excellent state and mum is currently away on holiday enjoying life! Mum is 72 but they gave her the most aggressive treatment plus immunotherapy. Don't lose hope. This is a fantastic site. The people on here are so positive and helpful. There are people on here who have been living with stage 4 lung cancer for years. Positive attitude is everything. It's as scary as hell when you or a loved one is diagnosed but it gets better. I was so terrified and scared. I saw cancer as the ultimate death sentence but nowadays it's not. Treatments for cancer especially lung cancer are getting better and better. Please keep us updated. We are here for you. This group really lifted my spirits and gave me hope in my darkest days so stick with us. We're going through this journey together. Make sure that you are an advocate for yourself and find an oncologist that you trust and believes in you. My mum had some awful doctors but her oncologist now is amazing. In the UK it's not as common to get a second opinion or switch doctors but if you're not satisfied with the doctor or their care and attitude, don't be afraid to fight and switch to another one. All the best. The first part is scary but the storm will finally blow over. Monica xx
  10. Was this the same clairvoyant who predicted 9/11?
  11. Sorry to hear about your first wife Gary G; that must have been tough however I'm glad that your story is more hopeful. Cancer is extremely common. They say that 1 in 2 people will get cancer which is pretty scary. Unfortunately I don't have much support from friends as they've never had a loved one suffer with cancer which can be lonely and make me feel alone. A lot of people also don't feel comfortable talking about cancer especially in the UK. I think a lot of it stems from lack of education or interest. Before mum was diagnosed, I knew very little about cancer. I myself wouldn't have known what to say to someone with cancer. For me cancer was a black and white thing; either you're cured or it's a death sentence. I had no idea that you could even live with it for many years like a chronic illness! My mum's diagnosis for me was a big education and still continues to be. I've learnt so much about cancer that I didn't know. I used to assume that all cancer was the same but just in a different place. I didn't know that there was so many different types of tumours and mutations. I didn't know that there's been such big advances in treatment. There also seems to be a lot more attention given to other cancers such as breast cancer which isn't very fair. I think that funding should go to all cancers, no matter how common or uncommon. I think there needs to be more education about cancer. I think many people shy away from it because they don't know much about it or what to say to people with cancer or to someone with a loved one who has cancer.
  12. I'm not sure what medical power of attorney is. The unfortunate thing about living in the UK is having different systems from the US. I haven't really heard of it in the UK but I can try to find out. What does it entail in the US?
  13. My mum doesn't want me at the appointment in person or via Facetime as she says I'm too neurotic and ask too many questions 😂. A friend of my mum's who is a scientist is going with her, which I think is better as she's more objective and has a better understanding. Even so I can't go with my mum as they say that my mum can only bring one person and someone who has had the vaccine against COVID. I haven't had it yet and my mum's friend has. So I actually think her friend going with her is a better option. It's good to have someone who is rational, less emotional and with a strong scientific background, she will be able to understand far more than my mother and I combined. Also my mum is useless with technology so trying to sort out FaceTime would make her more flustered 😂.
  14. My mum has a meeting with the team next Monday. As far as she knows there's talks of giving her three rounds of chemo every three weeks (2.5 months of treatment in total). We thought that she would have treatment for much longer like six months or more. Mum's going to ask more questions on Monday. I wish I could come with her but I can't go because of COVID. The immunotherapy didn't seem to work for very long. I thought that the effects last for several months. I don't know where it's pseudo regression. Obviously I hope that it is but I don't want to raise any hooes especially as at the moment it feels as though all of my hopes have been dashed. When mum had her excellent scan in August, I think that she only had 1 or 2 infusions. I don't know how quickly immunotherapy works.
  15. I can't find any info about this anywhere. If one immunotherapy drug doesn't work, can you try another or if one type of immunotherapy doesn't work, does it mean that they all won't?
  16. Hi Tom, She had a new doctor who seems miles better than the previous one. He didn't seem too concerned about it. My mum was told that she would have some scarring after radiation anyway. She received the highest dose as they treated her very aggressively. I'll get my mum to ask her doctor more next time. It's just one thing after another 😞. When can I ever relax and live in peace instead of constant fear?
  17. I'm really sorry to hear about your predicament; cancer is no easy journey. A lot of people on here have had multiple recurrences and are stage 4 and have been living with their cancer being stable for many years. You'll meet many of them on here. There are many treatment options out there for lung cancer. Perhaps you could try another immunotherapy drug to shrink the tumors. Also you could get a second opinion from a different doctor if you're not satisfied with your current one. My mum's consultant was awful so she switched to another one who is miles better and has more experience. You shouldn't have to settle for what you get. I wish you strength, hugs and prayers ❤️. Even if a cure is out of the question, lung cancer is no longer the death sentence that it used to be. People are living with stage 4 for many years and treating it like a chronic condition which in the past was unthinkable. Also there have been many advances in treatment over the past decade. My mum was diagnosed with stage 3B NSCLC in Feb and the doctor said that ten years ago her prognosis would have been poor but treatment has come so far and her outlook is positive. Hopefully you'll start seeing good results soon. Keep us updated x
  18. My mum developed radiation pneumonitis quite badly a few weeks ago and was treated with steroids which she recently stopped taking. She still feels breathless sometimes but is much better. I'm very worried as at her last visit with the consultant he said that she had pulmonary fibrosis (scarring of the lungs). He didn't elaborate about it or say much about it. He said that it's normal that my mum has these problems as she was given such a high dose of radiation. I've read about pulmonary fibrosis and it's a very serious condition. Idiopathic pulmonary fibrosis has a life expectancy of 3-5 years. I don't know if idiopathic (unknown cause) pulmonary fibrosis has a different outlook to pulmonary fibrosis. I'm scared that it will shorten my mum's lifespan and that she'll have chronic problems and she's still not a hundred percent better. She want for a short walk today but didn't have breathlessness, only hip pain. Has anyone else experienced this. My mum was told that she would have scarring from radiation but I'm scared that it's severe.
  19. Hey Zara, welcome to the forum. Stay positive! My mum was diagnosed with T4 N2 M0 in Feb and now she is NED! Don't let a negative doctor put you off. There's been a lot of advances in treating lung cancer. My mum's consultants said that 10-15 years ago, it would have been a very bad prognosis but now there's been a lot of advances in treating lung cancer. There are even people with stage 4 who have been living with cancer for years and are stable. You'll probably come across of a few of them on here. Also Tom is a good example of beating stage 3 lung cancer even before advances in treatment. Don't give up and keep on fighting. Treatments aren't always pleasant and my mum has suffered a lot, almost wanted to give up but unfortunately nothing in life comes easy. You have to grab any chance to get better by the balls. Even if it's GD! hard. You've come to the right place. There's so much positivity on here and the people on here give great advise. Unfortunately I'm not from the US and don't really know how the system works when it comes to doctors and healthcare, but others here will be able to advise you. I hope that you have a good medical team that believe in you. If not, find another. My mum was having problems with one of her doctors. She complained and switched to another doctor and it's the best thing that she could have done. Her previous doctor was inexperience and only filled her mind with worry and doubt. The new doc is much much better. Lots of love from London, England x P.S: My mum was and is being treated with curative intent and she is/was stage IIIB. Americans don't use the term "cure", but in other words it means surviving and even if cancer returns, doctors can treat it again and you can be NED again. Hopefully it won't return, but with any cancer it's a possibility but it doesn't mean the worst. Many people have multiple recurrences of cancer and beat it. Have you been told about immunotherapy? Ask your medical team if you may be eligible for it.
  20. Hi Saturn Bound, sorry to hear about your mum. My mum was diagnosed with stage 3B NSCLC, subtype squamous cell in February of this year. She had aggressive chemo-radiation and she's currently undergoing immunotherapy as maintainance therapy. At the moment she's NED and touch wood it will stay that way. It must be a very anxious time for you. It certainly was for me. I'm sorry to hear about the metastasis but there are many people who have been living for stage 4 with metastatic lung cancer. It's no longer the death sentence that it once was. Even the first lung consultant that diagnosed my mum said that 10-15 years ago her prognosis would have been bleak but now there's been a lot of advances in treatment. There are people on this site as well who have stage 4, have been for years and are stable. There's always hope and advances are being made all the time. Please keep up updated on your mum's progress and I hope that immunotherapy will do the trick.
  21. I'm so sorry to hear this very tough and sad news Zeynep. Unfortunately SCLC is very aggressive. My heart goes out to you. I know what it's like to really love your parents. I too would struggle to accept such a prognosis. There are people who defy the odds though. There are people who are told that they have only months to live, but end up living for years. My cat was diagnosed with two brain tumours and was given only 2/3 months to live. He ended up living for a little over 3 years! He was an old cat as well; lived to 19 and a half. I consider that to be a miracle. I don't want to give false hope either as it's cruel and nobody has a crystal ball. You have to prepare yourself for the worst, but that doesn't mean that you have to give up either. I know that I wouldn't give up on my mum if that G*d forbid was the case. I would do and try anything to make her better, even if I failed. Maybe you could seek a second opinion. Different doctors have different approaches. Perhaps you could get your dad into a clinical trial. I agree with Tom about Keytruda; I've heard good things about it. It's worth giving it a go. The others on here will be able to give you more advise about clinical trials, immunotherapy, and doctors as I don't know how things work in the US or about the healthcare system. I wish you and your dad strength and I too hope that he can prove the doctors wrong.
  22. My mum is doing incredibly well. Apart from immunotherapy side effects which are normal, her doctor said that her response to treatment has been excellent. She went to the hospital on Friday about the steroids for her inflammation from immunotherapy- she saw another doctor who on the team who confirmed that her scan was excellent and she couldn't even see the tiny remaining bit of tumour. She said that such a good response so soon isn't common and that my mum's exemplary. This is fantastic but fears creep in the back of my mind. What if my mum is NED and then the cancer comes back as small cell? Small cell lung cancer is a death sentence, even in the limited stage survival is less than 2 years. There's been little progress with small cell. Is there any risk for people with squamous cell developing small cell as a secondary cancer. I know that small cell is most heavily associated with smoking. My mum is a former smoker and she quit 14 years ago. I think she's had the odd puff during those years and she used to inhale my sister's in law's smoke, but my sister in law luckily gave up about three years ago.
  23. Thank you for taking the time to reply Tom. Your story is incredible and inspires me and others. Despite so many recurrences you're still alive and well and NED for over 15 years! Even 10 years ago stage 3 lung cancer was a death sentence. It's incredible how many treatments there are now and that stage 3 and even stage 4 lung cancer is no longer a death sentence for many. I'm praying to God that the immunotherapy will prevent the cancer from returning and that her body is responding well to immunotherapy.
  24. Thanks for the reply Tom. Gosh that sounds like it was a huge ordeal for you, having a lung removed and the cancer coming back to the other lung. Usually stage IIIB is inoperable. Did the doctor's want to try surgery to remove the tumours when they came back to the other lung? Sorry for asking so many questions. I've heard that surgery is seen as a "cure" or in American terms the treatment to long lasting NED, but it seems that despite surgery, the cancer still comes back. I felt so down about my mum not being able to have surgery. Despite the tumour having shrunk hugely (from 37mm to 3mm) they still want to go with immunotherapy and haven't said anything about surgery. Surgery I guess is pretty invasive and risky. What was is like after your surgery? Did you take a long time to recover?
  25. Is Cyberknife radiotherapy or surgery? Did you have surgery Tom and at what stage?
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