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catlady91

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catlady91 last won the day on September 20 2020

catlady91 had the most liked content!

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    London
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    None
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    United Kingdom
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    United Kingdom
  • Gender
    Female
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    Not a patient

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catlady91's Achievements

  1. Was this the same clairvoyant who predicted 9/11?
  2. 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.
  3. 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?
  4. 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 😂.
  5. 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.
  6. 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?
  7. 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?
  8. 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
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. 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?
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