Hi everyone. I am new to this group only having been diagnosed last November with stage 4 lung cancer. I have a secondary in my brain but am lucky to have the EGFR Exon 19 mutation so now on targeted table therapy Osimertinib.
Slowly working through the shock and trying to find informed and positive ways to live as long as possible whilst finding joy and gratitude in each day. Very much a work in progress!
I am looking to become more informed so I can give myself and family the best chance of as much time as possible. Already considering changing my diet amongst other things.
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Musicgirl71
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Hi, I'm in this group to help support my sister, similar age to you, stage 3 lung cancer, and mum to 4 boys, diagnosed Dec 21. I don’t really have any suggestions to help you, but wish you the very best in dealing with everything, and I hope you have lots of joyful times ahead
Hi Music Girl, love the name what type of music do you like? I joined the group last week and Iam still waiting the results of the Bronchoscopy and EBUS, next step treatment plan. This group is so supportive a big thanks to all😘 Like everyone else has said there is so much information, to support us sometimes I get confused 🤔.I have just signed up for an 8 week course on mindfulness, hopefully I’ll make it treatment allowing, this covers positive and negative thinking, diet, meditation and lots of other topics, Iam hoping this will support me with the road ahead. It’s early evening so hopefully I’ll be awake.
What is driving me mad is everyone friends and family asking me how I am feeling today. Iam trying to get them to change the question 🙋♀️ to how are you doing lol, which means I wont have to say Iam fine when I’m not really.
Let’s all keep positive, there are so many positive people in this group it’s made me realise that you can live life to the full with cancer.
Hiya. I love all kinds of music but cello, piano and singing are my loves. Come from a long line of music teachers.Sounds like you are right at the beginning of your hopefully long journey. It is perfectly normal I think to feel the way you do. I remember being very annoyed by the three words “I’m so sorry” on every card. One day I felt grateful for the love shown the next I could easily have put that card or flowers in the bin!
The things that have helped me are; time, some counselling, an anti anxiety med that had the fantastic side effect of helping me sleep. Most of all though it was the support groups that made me feel hopeful and supported and in awe really of this incredibly unlucky but incredibly strong group of people.
Hoping you get a speedy diagnosis and treatment plan xx
I’ve just had a first diagnosis on Tuesday and found this site on Thursday. It’s already been a great help to me. From what I’ve read a rainbow (Mediterranean) diet has been suggested as it’s good for gut health, which in turn is good for the immune system. My aim is to enjoy life, meditate, exercise and diet. Most important for me is to make the most of every moment with my extended family and friends.
A while ago one daughter suggested I could try giving myself positive messages instead of the negative ones I had become so fond of! It’s this self-fulfilling prophecy idea and tbh it been a life saver in finally managing anxiety. I’ve stopped continually playing the what if game as it just gets out of hand. For me, it’s not dwelling on something now that is my salvation; others call it mindfulness but whatever, past experiences have been a great learning opportunity.
Inside, I’m possibly not as calm as it appears but practicing self-calm can only be a good thing.
I hope you’ll be able to share your journey as well and say what works for you. We’ll never know if our way of managing can help another see their way through this part of life.
It’s so good to hear about others in the same situation. I am in the Second month of osimertinib and trying to live life to the full although frustrated this week when no-one will give me travel insurance. I really appreciate everything I’m able to do and hearing positive comments from others is so helpful and reassuring. Thank you for your post and really do wish you all the best.
Thanks hope the side effects are settling down for you. Are you in the EGFR group too yet on Facebook? On that group a lot of people use insurewith.com where they all got year round European cover for under £200. I haven’t done it yet but plan to. Hope that helps x
Thanks for that information , I was not aware of the Facebook page so will definitely look into that and the insurance. Side affects are annoying but manageable and refusing to let them stop me doing things. Hope to meet you all on facebook
Good morning, please have a look on our EGFR lung cancer website and Facebook page. The Facebook page has been a god send to me and made some amazing friends and learned lots and lots about my exon 19 mutation. Hopefully catch you soon at one of our zoom meetings. Much love
I found the book 'anti-cancer - a new way of life' by Dr Servan Schreiber both inspiring and interesting when I read it after my diagnosis in January 2011. I went onto read his other books - equally interesting and useful in equal measure - another I found helpful was 'cancer is a word not a sentence' by Dr Rob Buckman - which helped me adjust from thinking every twinge, cough or splutter after diagnosis must be related... good luck with your treatment...
Thanks. I will look those books out. I have just read the cancer whisperer which I really loved. I know what you mean though you go from perfectly fine to thinking everything has a sinister meaning. X
that's on my shelf along with her other book - 'life shocks' recently ordered - I met the author's father some years ago at the Houses of Parliament where I was supporting CRUK to help MPs/Lords understand about stratified medicine for lung cancer... and had a really interesting discussion with him about her experience - her book was just about to be published. take care.
Hi I have stage 4 lung cancer too with the ALK mutation. I get a lot of support from the ALK support group which is on Facebook. There is also an EGFR support group which I would recommend giving a try, as people in a similar situation to yourself. This is the link to their page egfrpositive.org.uk/ for the U.K. group. There is also a Worldwide one too. Wishing you the best response to your treatment.Which hospital are you at? X
I to have EGFR exon 19 deletion diagnosed stage 4 April 21 started osimertinib in June 21. It takes alot of getting use to and was the very last thing I thought I had no obvious signs until it attached to rib and plural wall. You most definitely need to be your own best advocate and research as much as you can about the disease. I got alot of support from the Roy Castle Foundation and also found a massive amount of information on YouTube especially from the go2 Foundation, this is based in the USA. I also found Facebook groups EGFR positive uk and the tagrisso group. These groups helped me immensely because they have the same mutation although not all are on tagrisso, but they are a wealth of information and experience. Being positive and staying strong in body and mind is crucial, but it's also great to have these groups.
What a lovely photo.... My husband has been diagnosed too...... But he is finding it difficult to find joy.... He is stage 4 and is still reeling from diagnosis.... As I am..... One day I am positive the next despondent. I am going to ask our macmillan nurse if we can go to our coastal retreat this weekend for 2 nights. We both feel joy when we see the sea. Its 100 miles away. I want to wish you best of luck. This desease is evil. Jan xx
Sorry to hear that your husband is part of this terrible club. Hope you get away from it all at the sea. I have benefited from a lot of family support, some counselling and a bit of time to adjust. Hope he does too xx
Hi Music girl
It's hard working through the shock and positive ways to live but we have to find a way.
I was diagnosed last August with stage 4NCSLC. It's been an uphill struggle.
Mine has spread to vertebrae., lymph nodes, small area of brain which was zipped successfully at Salford Royal. Which they said was successful.
I had a CT scan which was quite traumatic, fixing me to a CT scan and locking it with a mask!
Try and keep informed and positive getting as much information as you can to know what you are dealing with. Finding joy in everything. Looked to your friends and family for the support you need.
You will have the chance to have time with your family just don't give in.
Second chemo for me next week, immunotherapy didn't work. But I know I'll get there.
Thanks Pam. I am lucky to have plenty of support. The human body is amazing and of course to start with you think you will never adjust but you do. What is for sure every day is precious. Hope chemo works well for you and is manageable. Best wishes xx
ThanksMusicgirlThe human body is amazing what it can put up with.
HI Musicgirl71 Love your photo! How are you doing?
My husband was diagnosed a year ago with Stage 4 NSCLC, no mutations but good for immunotherapy. He had 4 cycles of chemo and now has the immunotherapy every 3 weeks. He's doing brilliantly and his scans show the drugs have essentially cleaned it all up.
You write about becoming more informed and changing your lifestyle so that have the best chance for living well - this is absolutely the approach we are taking. We are finding out as much as we can and my husband is making sure he's fighting fit for whatever comes next.
One podcast you might like to listen to is an episode of The Doctors Kitchen - the host Dr Rupi (a GP) talks to Professor Robert Thomas, an oncologist and researcher at Addenbrookes. It's fascinating and has lots of scientifically backed info about how we can support our bodies fight cancer.
I had a listen to Prof Robert Thomas. I’m happy to say that my dietary habits fit quite well with his recommendations. I just need to add nuts and berries plus more exercise.
Thank you. It was very interesting and I may mention it to my care team and see if they know of his research
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