The Roy Castle Lung Cancer Foundation
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Lung Cancer - did anyone here win the fight ?

Hello again, Jules here, on behalf of mum.

I read some posts here today which make my heart sink, my mums journey has only just begun.

One of you wonderful people posted the question 'does anyone survive' lung cancer.

The question was among other sentences, - i wanted to post it here today as a question.

Hoping for good news posts replying, meanwhile I am sending everyone buckets full of luck.

Kindest regards

Jules

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I find out on Friday if I have it...

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Oh Mr Baron - not you ! Not you as well going through this.

Oh my dear Mr Baron, I am writing on my calendar to remember to be wishing you luck,

Whats happening on Friday - is it a scan or the GP ?

Kindest regards

Jules

x

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It's a follow up appointment after another scan. They found nodules in my lungs in the last scan, some of them, 'significant'. They're looking for any 'growth'.

As I said, Friday...

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On my calendar mate - luck luck luck

Told my mum.

Jules

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Thanks Jules, I'll be fine, I promise :)

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Oh Andy, I do so hope all is well for you on Friday. What a worry for you.

Do let us know how you get on, I have everything crossed for you, fingers, toes, eyes......

Every best wish coming your way.

Jan

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Thanks Jan. I'll be fine!

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good luck tomorrow xx

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Thank you!

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Hello Mr Barron

Much much luck today - thinking of you

Jules

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I've just walked in. No further abnormalities, essentially an all clear. I'll be seen three monthly from now on

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Dear Mr Baron - Jules here,

....I am contented, content, cheerful, cheery, merry, joyful, jovial, jolly, joking, jocular, gleeful, carefree, untroubled, delighted, smiling, beaming, grinning, glowing, satisfied, gratified, buoyant, radiant, sunny, blithe, joyous, beatific, blessed....

and all other words to say HAPPY HAPPY HAPPY!, from me - brilliant news !

Kindest regards

Jules

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You do know it's only me don't you??

Thank you :)

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Hi Jules, in answer to your question, I've been surviving since diagnosis and surgery (upper left lobectomy) in January 2013. I've had a couple of scares since and have recently had radiotherapy for a tiny area of re-occurence in the same lung. I'm hopeful that the radio has done it's job - I will find out on 26th April. Although there are some very sad stories, there are also stories of hope - I know a chap who has been surviving for over 7 years and have read posts from another (on a different site), who has been surving for 11 years at the last count. Never give up hoping :) x

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Hi Jay, Jules here.

So so pleased someone has replied with positive story about the future.

My bestest luck to you for the right answer on 26th April - mums radio looks to be doing its job from the looks of the cancer showing on her tummy. But i guess you cant tell like that.

What is a lobec tomy ?

Jules

x

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A lobectomy is surgical removal of a lobe of the lung - in my case it was the top lobe of my left lung (we all have 2 lobes on the left and 3 on the right) :) Thank you for the good luck wishes for the 26th - wishing your Mum all the best for her treatment too, I hope she has the best possible outcome :) x

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Hi Jules

I've just turned the 5 year mark for surviving LC. I had part of my left lower lobe removed and followed by chemo to be on the safe side. In hospital and out in 8 days. It wasnt without problems but when i got home a caring supportive man sorted me out, so much so that after courting him for 32 years i married him, even though as a bride i wore a very believable hair piece!

Keep strong for yourself and mum.

Wishing you all the best and good wishes.

Hoggy

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Hello Hoggy - Jules here.

Your the second person to post a positive story! Brilliant to hear it.

I know that neither of you have or are going through a nice time, but your news has given me more hope for my mum.

Mums had radio to the cancer on her skin and is awaiting immuno therapy start date - next 2 or 3 weeks we think. The radio caused a lot of pain afterwards to the skin. I am told this is a 'good' sign ?

kindest regards to you Hoggy (and Jaynair)

From me and my family

Jules

x

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My uncle on my Dad's side had a lung removed in 1955 because of lung cancer. He lived until 1992.

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Hi Bob, Jules here.

Nice to talk to you today.

Can i ask, did your uncle have cancer ?

Jules

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Yes. Lung cancer. He died of a heart attack when he was older.

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thats sad Bob.

Jules

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Yes.

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Hi jules I had half of my left lung removed over 28 years ago, I would say that is surviving. I'm involved in advocacy work and meet many other long term survivors. The problem with lung cancer we don't promote the positive stories.

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Hi Jules I was diagnosed nsclc stage 2b in sept 2012 . I had lobectomy upper right lung oct 24th some four rounds of adjuvent chemotherapy and i have been NED since and looking forward to becoming a five year survivor later on this year .

I wish your mum and you all the best as you embark on this journey ...

Jane

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Hello Jane,

Congratulations - (is that the right word) for the coming 5th year NED - (i assume that means without cancer ?)

I hvae been reading other posts like this too today and it seems most here have had a lobectomy.

I am a little worried about that as one of the first things they told us was they couldnt/or it would be very difficult to operated where the cancer is.

But i guess, by the sounds of things its early days... shall take it day by day with mum.

Kindest regards

Jules

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Hi Jules

There are many encouraging stories and testimonies on the forum on people surviving lung cancer, even those with stage 4 advanced.

Thankfully the treatment for lung cancer has came a long way in the past 10 years, and there is still a lot more work and research to do.

You can do a search on the top right hand side for (surviving lung cancer) to read previous posts.

All the best

The Roy Castle Support Team

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Thank you i will

Jules

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Hi Jules , I had lung cancer just short of 5 years ago. I had surgery and they removed my right lung. No problems just a bit short of breath. :) xx

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Hi Jilly

Lots of people seemed to have had surgery and then survived, like you - absolutely fantastic to hear you have gone on and done well - i hope mum does.

A little worried thou - as i am quite sure they said they couldnt operate on mums due to where it is situated.

I guess i am just going to have to learn as i go along - doesnt feel right ringing mums cancer nurse to ask more.

Kindest regards

Jules

x

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so far so good, diagnosed October 2014, scans again in june time but I feel good apart from a mare of a cold at the moment. I am walking loads about 5 miles a day and can even run up a flight of stairs. 22 mile hike along the gower coast for macmillan last September too, so, there are lots of people who do well and fight this disease successfully. I was stage four nsclc T2aN0M1 XX

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Hello Sarah - Jules here.

You sound as if you have your health back (apart from the mare of a cold!) brilliant, uplifting news x

Sarah, the first letter we got said mum was stage 2 but two weeks after we had another consultant tell mum she, like you, was stage 4. I dont understand how that can be.

But, if you managed to get through it then mum can too.

Keep on going Sarah !

Jules

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Hi Jules, I'm not too sure why they changed their mind for your mum, did they get more results back. The only reason they knew I was stage 4 from the beginning was the fact that I had symptoms from my brain met rather than the primary in my lung. The lung lesion was only found following a routine chest x ray after my brain met was ct'd!!! I hope your mum is doing well, if you need to chat, call on me any time, what is the plan for her??

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Hi Sarah, Jules here.

You doing ok ish ?

Mums plan next is to start on a trial using the drugs NIvolumab and Ipiluminab (but mums been saying the NHS ?are now saying they might not pay for it if it costs too much) That is i mean, the whole trial for everyone waiting will not go ahead. I think thats whats been said.

Mum will not have chemo, so if its true, then i dont know what the next stage is.

Jules

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hello, I am good, I hope you are ok? I think you should speak to someone in the unit where your mum is being looked after she needs to know really if the nhs is gonna cover the cost I would have thought. xx

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Hello Sara,

I got a reply from a lady on the Headway Forum (its for brain injuries) and it looks like good news - i will copy it below :

Found these items online which seem to suggest that the NHS consider the duo cost-effective, so fingers crossed for positive news in May.

***********************

ICER for nivolumab plus ipilimumab compared to pembrolizumab is likely to be less than £30,000 per QALY gained in the mixed population of BRAF mutation-positive and mutation-negative advanced melanoma when the patient access scheme prices were used in the model. It therefore considered that nivolumab plus ipilimumab could be considered a cost-effective use of NHS resources.

The incremental cost-effectiveness ratio (ICER) is a statistic used in cost-effectiveness analysis to summarise the cost-effectiveness of a health care intervention. It is defined by the difference in cost between two possible interventions, divided by the difference in their effect.

End.

Kindest regards

Jules

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aaah this is good news, fingers are all definitely crossed, including my toes xxx

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Thank you Sarah - will let you know what 'the people in charge' say on 5th

Kindest regards

Jules

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the 5th May is a good omen, that is the day my chemo finished! I truly hope it is for you, your mum and your family xx

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It's good to hear success stories.

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I'm 5 years down the line in September this year, from right upper lobectomy and am fine X

best wishes

Yorklass

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Hi Yorklass - Jules here,

Brilliant to hear more 'survivor' stories!

Luck luck luck to you

X

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