catlady91
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Posts posted by catlady91
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These feelings are completely normal. Everybody with cancer including loved ones of cancer suffers have those moments. I know I do. I try not to think too much into the future and focus on the present and the small things that I have to look forward to such as a holiday or going out for drinks and dinner with family. I guess it's different when you have young children and there are so many milestones far off in the future.
Nobody can predict the future. What people expect from the future doesn't always happen. Somebody might be told that their cancer is terminal and they have months left to live but 20 years later they're still alive!
I can understand it's very emotional to think about your children's futures. I sometimes get emotional about my mum as well especially if I hear somebody pass away from cancer. I think could that happen to my mum and I get depressed.
Every person and every cancer is different. Lung cancer has seen so many advances in treatment over the past decade. More than other cancers such as pancreatic cancer where there's been very little progress. I think you mentioned that you have NSCLC which is far easier to treat than small cell which is far more aggressive.
There's a lot of hope out there. I read an article in my mum's Polish magazine about lung cancer. In the article it said that lung cancer is no longer a death sentence and even with stage 4, survival is no longer measured in months and that even some people can live for more than 10 years.
Cancer is scary and unpredictable but try to stay positive. You will have moments like this where you worry and feel great sadness for the future but it's completely normal. Those feelings are perfectly valid but fears do not predict the future. Nobody can. The future is unpredictable and with it comes good possibilities. I hate when people ask the question "where do you see yourself in 5 years time". I have no idea! Life changes and plans and priorities change too. People want who try to predict the future and plan their futures clearly are afraid of uncertainty and losing control. Although unpredictability can be scary, it can also be exciting and full of unexpected things that turn out to be good.
Try to focus on the present and things to look forward in the near future such as a holiday or a day out with your family. I also think it's important to have hope. Thanks to lung cancer treatment, more and more people are enjoying a future which wouldn't have been possible in the past. When my mum was diagnosed with stage 3B lung cancer in Feb 2020, the consultant said that 10 years ago such a diagnosis would have been very bad news and my mum would only really be given palliative care but now there's been such rapid advances in treatment that this diagnosis is no longer a death sentence.
2 and a half years later, my mum is alive, well and thriving and NED! She hasn't had any treatment since Jan 2021!
Anything is possible xx
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Mum's oncologist called her about the results of her latest routine monitoring CT scan and she's still NED. No changes. Next scan in 4 and a half months.
- RJN, LilyMir and Justin1970
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My mum was also diagnosed with stage 3b in Feb 2020 and she was on durvalumab. She stopped durvalumab after 8 rounds in Jan 2021 and since every check up scan she's been NED. She had another follow up scan last week and she gets the results on Tuesday. I pray to G*d she's still NED.
Mum had a lot of side effects when on durvalumab, not as bad as chemo but she had persistent pneumonitis and shingles plus tiredness. However I say no pain no gain. Immunotherapy has been a game changer in cancer treatment. It's great that your mum is eligible for it as it can have incredible results.
- Sallysh and Justin1970
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What wonderful news! I pray that you continue to have such good news xx
- Justin1970, LouT and EMandM
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My mum is doing fairly well. The health issues that she has are non-cancer related and to do with complications of a kidney stone op (she has recurrent UTIs which the doctor said is normal but nevertheless not pleasant). Mum otherwise is fine. Lungs and all are fine.
I know the the scan is routine but nevertheless it's always unsettling. Mum has been NED for almost 2 years (not including when they falsely misdiagnosed inflammation for recurrence in Feb 2021). I always hold onto hope that the cancer won't return. My mum says that the cancer won't return. I admire her positivity and don't want to dampen her spirits with my fears. I hope too that's that the cancer has gone forever but there's no guarantees in life. I go through periods where I obsess and worry about the cancer coming back and periods where I think, she'll be fine; she's done so amazingly well and her response to treatment has been incredible.
I pray that she's still clear. The scan is on the 26th July and she speaks to her consultant on 2nd August. The consultant said that my mum could be scanned less often but she said that she wants to take care of my mum even more especially after I wrote her a letter of gratitude for everything that she's done for my mum.
Mum is doing well other than for the kidney stones related issues. She hasn't been able to be as active (going for daily walks) because of the heatwave and UTI discomfort but she's still fairly active with day to day activities.
- Justin1970 and Tom Galli
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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
- Justin1970 and LouT
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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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I'm keeping my fingers and toes crossed for you Justin xx
- Justin1970, LouT and Izzy
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Thank you for your reply Tom. I read about Stephen Gould and found his attitude very inspiring. He was right, statistics don't show variation. A lot of statistics about general survival are outdated as they reflect data that doesn't take into account modern advances.
What I found a bit baffling is how can they know that someone has five years if durvalumab has only been around for five years?
I really hope that my mum will live a very long time. She has a lot to live for and is in good nick for her age. I take comfort in the fact that she is in the best possible hands. She's under one of the top cancer hospitals in the UK with the best oncologist who would move heaven and earth for my mum.
In regards to my question about if the cancer were to return, can people who have previously been treated with immunotherapy be retreated with it again?
- Justin1970 and LouT
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My mum is thankfully doing well apart from the aches and pains of older age and kidney stones which she needs an op for. Mum has been NED since August 2020 (not including when they made a mistake and mistook pseudo progression from immunotherapy for true progression in Feb 2021). Mum was treated with chemo radiation followed by durvalumab. She completed 8/12 infusions for durvalumab but had to stop due to bad side effects including pneumonitis.
When I have a bad day I research survival statistics. The NHS (British health system) recently posted an article saying the they will maie durvalumab available for regular use on the NHS. They said that it can improve survival for stage 3 lung cancer from 2.5 years to 5 years.
I'm a bit confused as durvalumab has only been available for about five years so how do they know on average they have five years left? They also said on average durvalumab effects last for about 2.5 years but wouldn't that give someone about 3- 4 years including other treatments, not 5??
I'm worried that if my mum's cancer was to come back there wouldn't be many other treatment options apart from chemo. She wouldn't be able to have any more radiation. Chemo isn't a very good treatment and doesn't lead to long lasting remission.
I researched if somebody can be retreated with immunotherapy but couldn't find any answers online. Can you be retreated with immunotherapy if the previous immunotherapy stops working?
I fear about the future. I did read that 5 year survival with immunotherapy is 43% for people with stage 3 cancer which is a huge improvement and 33% are still NED after five years. It doesn't seem like a huge percentage but it's a massive improvement from what it was in the past.
I really hope that my mum has way more than 5 years but I can't help thinking what if she doesn't have other options apart from chemo if the cancer were to return.
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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!
- Tom Galli and Justin1970
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I'll be keeping my fingers and toes crossed for you. I really believe in clinical trials- many are alive thanks to clinical trials when they had no other options. Keep us posted x
- Justin1970, Pstar and LouT
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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.
- DMaddox, LouT and Justin1970
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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
- Cody foote, Izzy and LouT
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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
- Cody foote, Izzy and LouT
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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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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.
- Izzy, Cody foote, RJN and 1 other
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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, LouT and Izzy
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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.
How often and what do you have for imaging checkups?
in MEMBER UPDATES
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My mum has a scan every 4 months. Her oncologist said that she could scan her less often but she said she wants to take extra care of my mum.