The Roy Castle Lung Cancer Foundation

HI IM THE NEW GIRL ON THE BLOCK !

Hi

Just wanted to say Hi to other followers on here and say that I'm newly diagnosed with multi-focal adenacarcinoma in both lungs and no treatment offered, but a clinical trial is quite likely. I feel so fit and healthy that its so hard to really believe that i have been diagnosed with a terminal cancer. I would love to hear from anyone who can offer me reassurance that they are years ahead of their diagnosis and still going strong. At present I am taking a number of alternative therapies / herbs an am hoping of course that these will have a n amazing effect on the tumours either by shrinking them or keeping them form progressing.

Just sending Love & Hope to all of you out there experiencing any form of cancer.

Boo3

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Sorry you've had to join this group. I hope you get treatment that helps and have support around you.

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Hi Dismal

Thankyou so much for replying and for your hopes :)) I am very fortunate to have tunsa support , and love around me ... I do feel blessed ... scan results tomorrow so all will be re wales . I hope you’re doing good too :))

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There has been significant progress in late stage treatment through targeted therapies or immunotherapy. I hope one or the other is applicable for you. It’s been over two years since my wife was diagnosed as ‘terminal’ and she continues to live a normal life. Apart from her targeted medication, she views diet as crucial but it looks like you are already considering this. Good luck!

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Could you tell me some more about the diet/herbs etc? My mother was diagnosed stage 4 and recieves a targeted therapie with the medicin erlotinib at this moment.

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Hi Juliana

I am taking Essiac, Colloidal silver, Aerobic oxygen and CBD oil . I also have changed to a plant based diet ( no meat) and as much organic produce as possible ... my darling daughter arranged for an organic box to be delivered to me weekly

It’s such a welcoming treat . I am also starting my day with a mixture of : grated fresh ginger , pressed raw garlic x 2cloves, juice of one lemon and grated rind of the organic non waxed variety , a spoonful of honey and boiling water in a teacup ( I use a vintage one cosit’s pretty ) .

I am looking into starting to take circumin ( from the turmeric plant ) . The benefits are supposed o be amazing I just want to find the correct dosage as it’s a minefield out there with deciding on the right one.

I hope this has helped :) if you need any other help please just ask.

Take care and sending a hug x

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Hi Ribeye :)

So good to hear back thNkyou :)) good to hear your wife’s doing well after two years ‘terminal’ diagnosis . I’m interested to know if it’s okay with you if she has the same kind as me ?? Or indeed if it is in her lungs ? Any tips for anything she is doing / taking to help ... id be grateful to hear . Many thanks :))

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Hi Boo3, My wife was diagnosed stage 4 adenocarcinoma. Metatastic spread included 8 brain lesions (she needed WBRT) and further spread to spine and kidney. She was also found to have the ALK mutation and prescribed Crizotinib as a targeted therapy. Whilst diet is important, there is no single tip. She gave up most meat, particularly processed meat. She reduced sugar intake and uses honey. She eats more fruit. She drinks no coffee, only green tea. She has also established a daily exercise regime. Important to remember that no two people are the same. Tolerance and reaction to treatment can be very different. Once again, best of luck with finding a treatment which works for you.

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Thankyou Ribeye ... great to hear about your wife’s recovery and that she’s doing well with her exercise regime and change of diet etc . I’m just about to start mine :)) I had great news yesterday so want to shout out loud and share it :)) my latest ct scan has come back with No Change so I’m feeling well and truly blessed ... I send hope to all that Miracles can happen .. I am being shown this again and again so never ever gonna give up hope . Please say hello to your wife for me and give her a Big Hug ... Thankyou x

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I was diagnosed with stage four incurable NSCLC Adenocarcinoma in March 2015.

I have had chemotherapy, oral biological therapy, and clinical trials. I am currently on an experimental targeted therapy for my particular mutation.

Make sure you find out if you have any targetable mutations and if not there are other options such as immunotherapy and chemotherapy.

Ask questions and get as much information as you can.

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Thankyou hillyblue :) love your name :)) is targeted therapy radiation ?? Seeing my oncologist tomorrow for results of last scan to determine what’s happening in there . How are you feeling fit/health wise ?? I hope you are feeling really well of course . It’s just that , sometimes it seems like they’ve given me someone else’s diagnosis as I’m so well in myself , and I feel so blessed that I am ... but it’s just all scary . Thanks for getting back to me ... very much appreciated x

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Targeted therapy refers to a number of new drugs which target specific mutations the cancer may have. The common ones tested for in the UK are EGFR and Alk. Usually a biopsy or bronchoscopy is used to test for these. The treatment is in tablet form and they are usually first line treatment if appropriate. There are some side effects but these can be managed.

You should ask your oncologist about these.

I feel OK generally but some of the treatment causes side effects so that obviously impacts on how you feel day to day.

It's all very scary at first but don't panic and don't give up as there has been a lot of progress in treatment for NSCLC lung cancer over recent years.

Make sure you ask about new treatments available if not at your local hospital then maybe elsewhere.

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Hi Boo

I was diagnosed with stage 4 ALK positive adenocarcinoma 4 years ago and the treatments have changed a lot during this time. I also use the American Inspire website as people are on there from all around the world and talk about their treatments etc I would say it’s worth putting a post on there page too. I follow people diagnosed as stage 4 12, 10 and 8 years ago. Plus a lot 5 years ago. Grace in America is another good source of info especially for rare cases. Wishing you all the best Bow x

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Meant to say GRACE stands for Global Resource for Advancing Cancer Education and was started by Dr Jack West a Thoracic Oncologist. It’s worth a look on their site

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Thanks Bow :) very helpful & encouraging x

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Hello Boo3,

Welcome to our forum, I am sorry to hear your diagnosis, as you can see from the replies to your post this is a very supportive forum where other members will share their first hand experiencies and give advice. A healthy balanced diet is advisable and will always help, remember to let the medical staff know if you are taking any supplements, herbs or using alternative therapies as sometimes these can interact with cancer treatments.

If you have any questions please give us a call on our nurse led helpline freephone 0888 353 7200

Kind regards

Roy Castle Helpline

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Thankyou helpline :) this site is so helpful and welcoming ... good to hear from you and others do quickly :))

All of this helps aswell as being very positive also ... but I am grateful for all of this feedback :))

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Hello Boo3,

Welcome to the club nobody would choose to belong to! There is a lot of helpful information about the different treatments for lung cancer on Roy Castle lung cancer foundation website. It can be very scary but as others have said, treatment options have developed a long way in recent years and many medics and general public are not up to speed. Basically treatments fall into the categories of surgery (open thoracotomy to remove a part or the whole lung, video assisted thoracic surgery (keyhole) to remove a wedge of the lung or a lobe) but not everyone is able to have this, radiotherapy (including SABR/cyber knife) in different forms, chemotherapy (in different combinations dependent on the tumour's biology/markers), and immunotherapy (using the body's own immune system to fight the cancer if specific drivers are within and affecting the tumour). Some patients may only have one or two of these treatments but more usually, a combination of approaches is used and some treatments are only available in the UK when others have failed (sequence of treatment is referred to as lines - e.g. 1st line therapy, 2nd line therapy). Then there are clinical trials that offer patients in some centres access to new treatments being developed or new combinations of treatment (often aimed at reducing the 'damage' to other organs/tissues caused by the treatment). hope this simplistic description helps. Do ask your oncologist or nurse any questions you have - write them down before you call/visit them.

Following my diagnosis and surgery, I read 'Anti-cancer - a new way of life' by Dr Servan Schreiber and found it really helpful to understand all sorts of things including impact of our lifestyle on our condition - whether exercise, diet, sleep, spiritual support, friendship/family etc. At the time, I didn't want to be in a patient group nor post online (not that there was anything like this then (Jan 2011) but now post to offer suggestions of things I found helpful. My diagnosis wasn't terminal but I've met others who were - and several have lived years after they were told they wouldn't be here so there is much to hope for. good luck.

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Thanks for your tip about the book

Best wishes x

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"The club nobody would choose to belong to". Love it😂

For my peace of mind, I normally make a point of avoiding "why me?", "how come" and "what if" musings. What's the point? I have NSCLC: get on with it, is what I usually say to myself. However, thanks to Gefitinib, it's now something like 21 months after a terminal diagnosis of the disease having returned and not dead after a year or slightly more. The return was 2 years after removal of the lobe where the large but single tumour was located. Only now am I caring to wonder if the original needle biopsy could have triggered the eventual return of the cancer across what remains of my lungs. I suppose I should ask the oncologist, but is there much point? The situation is what it is. Without the biopsy, we wouldn't have known quite what we were dealing with, but did the biopsy liberate cancer cells to settle elsewhere in my lungs?

Neil

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Hi Neil

Sorry to hear of your current situation ... but remember new treatments & trials happening all the time so keep that positive hope going :))

As you say ...it is what it is ... and will probably never know what is the cause of it ... chicken & egg situation ... sending a Big Healing Hug to you . I’ve just had a complimentary ‘Reiki’ session at Macmillan SUpport Centre ,Brighton .

It was such a lovely peaceful healing experience . I hope you have a Macmillan near you because as you probably know they can help anyone with C . You sound a very positive upbeat person so well done for keeping those spirits up x

Boo3

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Hi Neil, interesting question but it may also be that cells were there beyond the margins that were surgically removed but weren't visible on scans at the time.

There's so much still to learn about the science and different lung cancer types/responses. I guess my question would be, what difference would it make if you had the definite answer? Would it be that nobody should have investigations for the very slight risk that something might be missed (but you could die in the meantime) or do you let the condition run its course without treatment and not survive? Or something to blame? Sometimes when recurrence happens, the tumour characteristics are different from the original hence using different treatments (this happens with breast and other cancers) so you could ask your oncologist about this but regarding needle biopsy being the possible cause I'd doubt it. Some patients have recurrence who haven't' had such procedures.

When I learnt how few patients are eligible for surgery (due to position of tumour, ease of access, stage of development and general fitness), I was even more appreciative that I was able to have it so am thankful for the whole treatment however difficult it may have been as without it, who knows whether I'd still be here?

In autumn 2012 I attended Roy Castle conference in Birmingham and several patients/carers were saying they wanted to know what caused it (besides known causes - radon gas, asbestos exposure, tobacco exposure) and the charity responded with the answer that still rings in my head - less the 5% of all cancer research funding goes on lung cancer, so a choices need to be made, would it be better to spend this on the treatment or looking back into a potential myriad of causes? I guess we all want everything but with limited funding, difficult choices have to be made. However in recent years as genomic sequencing has become much cheaper and more targeted agents available, working out which treatments are more likely to work on certain types of Lung cancer seems to me to be a good way forward.

congratulations on your response to treatment so far - I know and have met many patients way beyond year 4 on similar treatments so here's to many more for you. Good attitude and approach too.

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Hi Janette,

Thanks so much for ALL of the above... so much info ... brilliant :)) I’ll be looking into lots of your suggestions ... starting with the book ... sounds interesting . And to know of people who are surviiving the terminal thing is massively reassuring ... into my positive pot with that one ..Cheers :)) !

Boo3

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Hello Boo3 and welcome. It’s a strange feeling when one is diagnosed with any form of cancer. I am sorry to hear that it is terminal. However you seem strong in mind and willpower. Holistic therapies, diet, meditation, excercise are all good and can help you feel positive. I hope you can also be offered treatment or trials if it can help you.

Love and blessings to you and your Family.

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Good to see you are feeling positive, Boo3 - another book you may like is 'Cancer is a word not a sentence' by Dr Rob Buckman - that has helped me several times when I've developed a chest infection or been ill as it can be hard to stop your mind from thinking every symptom that we develop after diagnosis is somehow related to the cancer or is a sign that the cancer is coming back - more often than not, it's not so his explanations and context really helped me. He also covers holistic/complementary therapies approach. good luck. x

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Ah thanks Janette - good to hear all this stuff ... it’s good forward thinking & advice so I’m armed ready and it all helps so much appreciated . I hope you’re having a good day :))

Boo3 🌞

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Thanks Boo3, every day is a good day (just different degrees of 'good'). I found my whole outlook on life changed after my diagnosis - some stuff just isn't worth sweating over, blame/guilt thinking is pointless, the 'why me?' question might just as well as 'why not me?' given the suggested odds now of 1 in 2 people being touched by cancer at some point in their life within the next 20 years, then the 'why me?' when I survived yet some didn't only amplified the voice in my head saying 'this must have happened for a reason so you can be the voice of those no longer here'.

I don't take on the 'stigma/guilt' some may feel or led to feel for having 'contributed' to their condition due to lifestyle choices as I didn't follow the obviouscontributor so I challenge scientists/medics when designing their research studies or looking at treatments to consider there are many patients who have never smoked or whose circumstances may be completely different from their 'average lung cancer patient'.

I've met some wonderful people, learnt some fascinating things and experienced situations that would never have arisen if I hadn't had my diagnosis. I'm not Pollyanna but as others have said, 'the situation is as it is' so better to make the most of it. best wishes :)

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