Hi,
I'm new here.
I was recently diagnosed with nsclc stage 4 with bone mets. The primary is in my right lung and the bone mets are in both shoulders, I'm reasonably fit otherwise with no other underlying conditions, except for a slightly under active thyroid
Does anybody else have similar and have you been given a prognosis and have you passed that prognosis?
Does the goal of 5 years only apply to people who's cancer is contained in one area?
I'm after some honest answers (even if it hurts)
8 years in August! Told 1-2 years without treatment back in 2014.
That’s amazing what was your original diagnosis? and what treatment have you had?
My diagnosis was nsclc stage IV with lesion in lrl, mets in vertebra, ribs and liver. Did Carbo/Alimta for 6 treatments and went on Alimta maintenance until Nivolumab was approved. PDL-1 was inconclusive but I got on it and stayed on it for 4 1/2 years. Had hip radiated that popped up and then some lymph nodes in the lungs. Switched to another immunotherapy, Tecentrig for a year and decided to take a break due to covid. Had brain radiated via Gamma Knife 3 times and my adrenal gland radiated 2 times last year. Went back on Tecentriq this past March and had my L1 in the lower spine radiated. Fun times!
Wow that’s amazing, aI was diagnosed in December 2020 inoperable, one tumour I’m upper left lobe, and 2 nodules I the right lung, did a year of Pembro immune , till there was a marginal progression, so they put me on 2 chemos, which shrunk everything, now I’m on maintenance Chemo since February 2022. I’ve been lucky I have still been able to work, as my company have been very supportive, and have Allowed me to work from home. Some people think I’m mad but it really helps me mentally, I’m 54, and don’t feel ready to go anywhere at the moment, not sure o will ever be!!! You have done amazing, what do you feel is the one thing that has helped you ? If you don’t mind me asking?
It sounds like you are doing great! You are allowed to be mad as cancer sucks the life out of us.
I honestly think exercise has been my life saver, along with my dog who needs me! I do not have a support group and moved to a different part of the state a year before I was diagnosed. Neighbors are ok but no one wants to deal with someone with cancer I found! Until covid hit, I worked out in a gym 4-5 days a week plus walked about 3 miles a day with my dog. I stayed in great shape and I think that pulled me through all the negative thoughts that would fill my mind. I also cook almost everyday and eat plenty of protein, veggies and fruits. Wine is must in the evenings as well for me!!
Since my adrenal radiations, I have had to deal with horrendous pain at the site. It came on right after my first covid vaccine but doctor's think that is a coincident. Now trying pain meds for the first time in my life but they make me feels awful. I am trying to keep up my exercise routine but it is getting harder!
Glad you are able to keep working and they are supportive. I am retired but stay busy keeping up with the house/yard and dog. Slowing down is hard for me so I push through. Sending you some of that energy to keep going strong!!
That’s amazing how you have stayed active, I was active when I was diagnosed, walking 2-3mies a day, I feel it helped me mentally too. During chemo it did get harder!!!I am trying hard to get my fitness levels.
You take care keep up the good work and long may it continue for you xxx
Very sorry to hear this.I have the same as you but my bone mets are in my spine, right femur and left pelvis.
I was diagnosed in February 2016 with a prognosis of three to nine months. I have had radiotherapy, chemotherapy and currently receive pembrolizumab immunotherapy. Also denosumab injections to help protect my bones from fracture. Hoping the fact I am still here over six years post diagnosis also gives you hope.
The lovely people on this forum are very supportive, encouraging and happy to share information, which I am sure you will find helpful.
Sending best wishes and positive thoughts x 🌻
It's always a shock to receive a lung cancer diagnosis and we often believe it's only a negative outcome but things have changed considerably since my diagnosis in January 2011. Fortunately I didn't have bone mets but I've been involved in lung cancer research since end of 2013 and attended many events where bone mets have been discussed. Many are treated with ablation (SABR) and some with other treatments. The 5 year target confuses me - do you mean 5 year survival? It's a complex measure recorded and many assume that it means all the others die after 5 years.... I've attended various sessions over the years to try and understand better the terminology and statistics used in studies. At the time of my diagnosis, it all sounded doom and gloom whether I googled or read patient information at the time but since then every treatment type has changed, most are given combinations of treatments and even in advanced lung cancer many are surviving much longer on targeted agents or immunotherapy and when an agent stops working, another has been developed to take its place. There are many different types of lung cancer and different treatments exist for the different type - much more personalised to the characteristics of the tumours themselves as well as patients having different other conditions or being more/less fit/old at the time of diagnosis. There is good explanatory information written with clinical input, regularly updated and reviewed by a patient panel on Roy Castle lung cancer foundation website. Their publication on bone mets was only recently updated so hopefully you will find the answers to many of your questions in there.... never give up - I had no idea until I became involved that some people survive many years even with advanced disease - I worked with several - a few of whom have died during the pandemic but not from their cancer - one 18 years out from his diagnosis and the other 27.... they're not the only ones....
Try not to google generally as lung cancer statistics and information is woefully out of date as many studies have their own websites or are published in top scientific journals which seem to have poor search engine optimisation compared to other stories that often are inaccurate and even misleading. Good luck with your treatments.... roycastle.org/app/uploads/2...
Hi Nopinkforus Welcome to the forum. Sorry you're here though.
Some great stories from others already. My husband isn't quite so far out....yet. But we're damn well working on it!
He was diagnosed in Feb '21 - so only about 18months ago - but had a pretty poor outlook then... NSCLC in both lungs, lymph nodes and extensive bone mets. He had 4x rounds of chemo + immunotherapy and now just has the immunotherapy every 3 weeks. He's just had his latest scan results and there continues to be no evidence of disease. He has pretty much no side effects from the treatment and is a very active and healthy 55 year old.
He works really hard on his mental health and physical health, with lots of exercise and a great diet (most of the time 😜).
As everyone here is saying, take the survival stats with a pinch of salt. They are out of date, and the explosion of fantastic drugs available for lots of different sub-sets of NSCLC has really only come into play in the last few years.
The really important thing right now is to make sure your cancer is fully tested so that they get the best treatment for you from the get-go (targeted drugs if your cancer has specific mutations or, if not, immunotherapy if your PDL1 status is positive).
Keep in touch and best wishes,
Sarah x
Hello Nopinkforus
As you can see from the replies above we have some amazing stories, with current research and new and better targeted treatments average survival rates are continuing to improve many people who are now way past the average 5 year survival.
With the lung health checks the aim is to try and detect lung cancer at an earlier stage meaning treatment can start before the disease becomes advanced which should further improve the survival rates.
It is good you are still feeling fit with minimal symptoms, try not to avoid looking at google as there is a lot of out of date information that is no longer relevant.
If you would like to discuss anything you can email ask the nurse at lungcancerhelp@roycastle.org or our free phone nurse led helpline number is 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600
Kind regards
Thanks everyone for your replies. This is a lovely place with lovely people. Xxxxx
Docetaxel & Nintedanib for Non Small Cell Lung Cancer with Mets to the bones
Non-smoking fit lady with NSCLC
My mums journey with stage IV NSCLC
NSCLC operated in March, starting chemotherapy on Monday
