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The Roy Castle Lung Cancer Foundation
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Just need hope

Hi everyone my first post my dad 74 been diagnosed 3b lung cancer that has spread to few lymph nodes, he is fit for his age but has always suffered with chest problems since birth , we are all devastated has they have only given him 12 months we are all due to fly out to Cyprus for my wedding but now insure on insurance costs my moms 6 years clear from stage 4 throat cancer now my dad don’t know how we are going to get through this can anybody give us hope not ready to loose him xx thank you ❤️

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In 2010 I was told I had 10-15 months with stage 4 lung adenocarcinoma. It’s best not to pay attention to those expected life lines. They’re based a bell curve and they tell you the median. There are hundreds of thousands of lives represented on that bell curve and no one can say for sure where he’ll be on that line.

In the last 3-4 years we’ve seen many advances in lung cancer treatment. The numbers represented on that line are also outdated as they do not reflect the more than 2 dozen new chemo drugs and radiation advances.

Your dad’s general health going in will be an asset in his recovery. When treatment is done push for pulmonary rehab.

When is the wedding scheduled? Chemo is an every three week thing and doctors will arrange a chemo break for him.

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We fly out the 18 August they said the chemo will be 2 weeks then 2 off & so on , don’t know much more has waiting to see oncology xx

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What is pulmonary rehab ? X

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Pulmonary rehabilitation is A program that has educational and exercise components. It’s a closely supervised program that helps to strengthen the muscles that support breathing.

lung.org/lung-health-and-di...

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So sorry to hear your news, I’m going through similar with my mother at the moment. It’s just so scary and devastating. May I ask why only 12 months? Could he not have treatment?

Surely chemo may give him longer. Hope you get a better prognosis soon xx

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They said he can have chemo but nothing more has it was spread to his lymph nodes we are praying he gets longer he has always suffered with chest problems since he was a child xx

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Morning! I’m so sorry your in this position it is just so unfair. I know the feeling, we were in the same position just under 3 years ago. Mum in law was diagnosed the same nsclc stage 3a, she was 59 when diagnosed. She took every treatment possible, it wasn’t easy but she got 2 and half years. Some treatment/chemotherapy/radiotherapy is easier than others, she was strong and determined. If your dad is well I’m sure he will handle the treatment and get longer than a year. My mum in law was also given one year.

My email tonicameron18@icloud.com

If you need to chat, I did a lot of research.

One of the things mum in law didn’t try which I was she had was cbd oil I have known a lot of people who have extended there life expectancy and have kept away a lot of the pain.

Take care, good luck 🍀

Toni

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Thank you & I hope he gets 2 & half years that would be great we have ordered him some CBd so keeping fingers crossed x

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Oh that’s good, when I looked into cbd oil the big thing was the strength it has to be a good high dose, not from a health food store I believe they are not strong enough. My mum in law used an amazing travel insurance it really wasn’t bad price. I will try and find the information for you.

Toni

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That will be fab thank you x

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so sorry xxx

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Found the travel insurance company.

It’s called insurance with

0208 38293875

Mum in law did hers online.

She paid 98.00 for 1 wk to Spain.

Let me know how it goes

Toni x

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That’s fantastic thank you , need to speak to oncology to see if he can go has he hadn’t started his treatment yet and you go 18th of August so keeping fingers crossed x

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Hello NRd19,

I am sorry to hear about your dads diagnosis, this must be a very difficult time for the whole family. As you will see from some of the other replies the time scale that the Oncologist gives is only a guideline and no one really is able to predict how long your dad will have.

Roy Castle has an information booklet on Travelling with Lung Cancer and at the back of the booklet some insurance companies which might be of interest to you, I have added a link below.

roycastle.org/system/file_u...

If you would like to speak with someone can you can call us on our Freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

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Thank you 💕 x

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Can anyone answer why only 2 years treatment for immune therapy if it’s working ? X

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Dear NRd19

The licence use for the immunotherapy is only for 2 years as no extensive clinical trials have been conducted beyond the 2 years. Drug licensing is strictly based on clinical research evidence.

Another option may be to consider asking if there is a clinical trial that may be suitable, this link will take you to the list of open trials in the UK from cancer research UK:

cancerresearchuk.org/about-...

All the best

The Roy Castle Support Team

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After reading how people are responding to this treatment seems so unfair that if it works for that person then they should have it for longer , it’s people’s life surly they should be the voice to continue if it’s working for them so unfair if it’s working 😢

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Dear NRd19

I agree and very frustrating for everyone, it is something that will be in the pipeline for review. Any updates and news on this will be on our website as the information comes in.

Kindest regards

The Roy Castle Support Team

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So wrong if it works for that person they should have the choice to continue until it stops working there’s choices shouldn’t be taken away from people who need it , very frustrating we are waiting to see if my dad can have this we go Wednesday evening xx

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Just a question I’ve herd cbd oil helps is this ok to take , has any know if it helps x

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HI NRd19

I would check using cbd oil with either the specialist or GP, as you would not know if there are any interactions or benefits from this. There is some very useful information on cautions in using this from Macmillan support link:

macmillan.org.uk/informatio...

All the very best

The Roy Castle Support Team

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Please have hope, my mum was diagnosed with stage 4 lung cancer in January and in March we found out it had spread to her brain, shes had 2 cycles of chemo and due her 3rd on 29th April, she had a chest scan last week and her cancer in her lungs has gone from 31mm to 20mm, head scan next week and we are praying for the same positive results. You have to have hope, I've had so many dark times over the past few months and at time have felt I can't carry on as the thought of losing my mum is unthinkable..

Are they offering your dad treatment? Big Hugs and thinking of you and your family xxxx

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So sorry to here about your mom I know how you feel not ready to loose dad yet & struggling to cope of that thought my mom is in bits after getting over throat cancer herself so unfair atm they are testing him for that new immune therapy if not it will be chemo xx we are living on hope 💕 thank you for your message helps knowing your not alone x

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Hi I'm so sorry to hear your news. I was diagnosed with 3b lung cancer in Oct and told without treatment my survival rate was 12 months. The cancer was also in my lymph nodes in my sternum and collar bones. The offered me immunotherapy now 6 months down the lune I have no cancer visible in any lymph nodes and my tumour has shrunk. So always stay optimistic and don't be afraid to ask the oncologist questions. Good luck to your dad and best wishes for your wedding.

Sadly on immunotherapy I can't travel but I hope your dad can speak to the oncologist.

Best wishes

Janet x

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Thank you for your message how come you can’t travel with immune therapy if you don’t mind me asking I know August isn’t that far away so not much time xx

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Because strange things are and can happen when on immunotherapy you have to be close to a very reputable hosp. Eg we had booked just recentally a week away on canal boat 2 weeks before ended up in hosp with fluid on my heart and in lungs immunotherapy caused it:( didn't get had to cancel but upon saying that I have had no side effects apart from feeling tired in the afternoon and putting on weight lol. Immunotherapy isn't as harsh as chemo but not everyone is a candidate for it something to do with having the right markers. But please please ask your oncologist about your wedding you never know as they will know your dad better than anyone.

Janet x

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Tank you for yelling me , such a difficult time , I’m so glad your treatment has helped you , hope you have more good news along your journey you are remarkable to get through everything it’s not easy xx we are going next Wednesday so will ask xx thank you x

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As others have said, there have been so many changes in lung cancer treatment in recent years - do not give up. There are many more and different combinations of treatment in clinical trials at the moment. I have met so many who were given less than 6 months by their clinician who went onto exceed that considerably. There are so many factors and none of us are a statistic so why we are so ready to buy into outdated statistics when treatment options were much worse is a mystery to me. My diagnosis was Jan 2011 after having had a left upper lobectomy (half my lung surgerically removed). At that time there hardly any of the treatments that are now standard of care for lung cancer. good luck.

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