Any similar experiences out there

[SJR43]

Hello All

So...my dad has a 3cm adenocarcinoma in his lung and a 3cm secondary tumour on his spine. That is all. He has had radiotherapy on his spine to shrink that one and some stabilisation surgery. They are not doing anything on his lung until his performance status has improved...but if he can get up to a 0 or 1, they will offer Keytruda as a first line treatment...if not up to that in six weeks, standard chemo as palliative care.

We are concerned that even though there are just two small tumours, all the talk is of palliative care and gloom and doom....would be grateful for some positive experiences out there....he is weak because he completely lost his appetite...before this he was a gym goer, really fit...only issue was a bad back - which is where all this started....

[JanetteR57]

Hello, when I was told I had suspected lung cancer in Dec 2010, I tried researching and everything seemed doom and gloom. Much of the information on the internet is out of date and everyone is different as statistics are averages. There have been so many improvements in understanding and treatment of lung cancer and the human genome since then in every mode of treatment, surgery, radiotherapy, chemotherapy (different combinations of each), immunotherapy, biological agents and there is a global will across the world to improve this. Pain in the back and shoulder are often missed as LC symptoms as common for other conditions. It's positive that he's had radiotherapy to shrink the one on his spine and some surgery to stabilise him. I have met many patients who were told they had stage iv and little time but have lived years so everyone is different. In the meantime, others who were told this have benefitted from clinical trials and new treatments or combinations of treatments that have only been used for lung cancer in the last few years dependent on the specific mutations in their tumour. The suggested Keytruda is often used for certain biomarkers/mutations as it works on the immune system. His previous fitness will certainly be good for his overall health/treatment tolerance. wishing you luck.

[MH1954 in reply to JanetteR57]

Hi Janette

Palliative Care,when people newly diagnosed hear this word it can send them into panic, shock and disbelief

The phrase 'Palliative care' is so missleading and it's never talked about openly enough, when people hear the word Palliative they think it's all about end of life care

I was diagnosed over a year ago with stage 4 lung cancer with mets and I was told palliative care treatment only which at the time really upset me but as I learnt more I realised this is not the case

Palliative care chemo involves treatment to hopefully shrink the tumours then stabilise and improve pain symptoms

I had chemo from November 16 - Feb 17, before I started this I was losing weight due to not being able to eat very well plus had pain symptoms

From my very first cycle my quality of life improved considerably I then had a break from treatment now I am due to start radiotherapy next week due to growth in secondary tumour to hopefully shrink it again and improve quality of life

When I am starting new treatments I always ask my oncologist what's the next plan of action when this had stopped working and he always has something up his sleeve to give me hope for the future

So please don't you or your dad think of palliative care as all doom and gloom, yes, everyone is different and responds differently to various treatments but things have come a long way with all new drugs being offered now and many of us are going past our sell by dates

Hope your dad soon improves and can start his treatment

Margaret

[JanetteR57 in reply to MH1954]

I know - mine wasn't stage iv but I know many patients who have this stage and have been for years. One of the research groups at national level for cancer research (I'm on the lung cancer clinical studies group) has changed its name to 'supportive and palliative care' which although subtle from its palliative care is meant to give hope to those that supportive care can go on for years and doesn't mean the end is imminent. We all need support through our various journeys and experiences and as others have said, whilst patients are 'sustained/maintained' with the current treatments for some time, there are new ones being developed and researched all the time. do not give up….for many, they're living with it almost as a chronic condition to manage like severe asthma, diabetes etc so keep the faith...

One of the lessons I've learned is the importance of using language and listening/explaining when terminology causes confusion - it's the same as everyone dancing around and stating 'the c' word' or 'the big c' implying that all cancers (there are over 200 of them) are the same and all have the same outcome. We're all different and even within lung cancer, people's experiences, tumours and mutations, biomarkers, lifestyles, fitness etc etc etc are different… good luck to all however you're effected to be on this forum

[Hillyblue]

I was diagnosed with stage 4 adenocarcinoma in March 2015.

I've had chemotherapy and an oral drug as well as a clinical trial.

I assume your dad has been tested for mutations which are common in this type of cancer. There are lots of targeted therapies out there now.

Don't give up hope. My oncologist was very positive and although he could not cure me he said he would get it under control

[livvyloot]

I too was very down when told palliative care, I have stage 4, had the tumour removed from my lung, but it has gone to the lymph nodes and spine, and was told lung cancer is un-curable. But reading all the comments from people on here has given me much more hope for the future - as they say - the doctors will control it to give a longer quality of life - and as we all are - hoping that a cure will be found sooner rather than later.

I have had a course of chemo which finished in June and my next line of defence is immunotherapy (when the dr decides it is required)

Keep positive. Wishing your dad all the best. xx

[MissyD1]

Hi SJR43 my mum has also been diagnosed with stage 4 Adenocarcinoma which has spread to her bones.

I was also very upset with the stage 4 diagnosis and talking about "palliative care" but to be honest it isn't all doom and gloom. Palliative care just means that the treatment goal now is to relieve symptoms and hopefully slow or halt progression insteading of intending to cure the cancer. It's not the same as hospice care or end of life care.

My mum had also lost her appetite and was not eating well but has now had 2 rounds of chemo and her appetite has returned and she generally feels much better. She too had a lot of pain from the cancer in her spine and hip but the radiotherapy has taken this away so hopefully your dad will start to feel better soon!

Just take each day as it comes... The lung cancer treatments have improved so much in the last few years and there is every reason for you to have hope!

Sending you best wishes x

[SJR43 in reply to MissyD1]

Thank you so much for replying...good to hear! Best wishes to you and your mum!

[Hidden]

Hi I am also stage 4 which shocked me at first as lung surgery had always been curative intent.However ,having had time to think things out ,I am still here doing stuff with my lovely family trying to make good memories while I am able and trying to make the best of things in the guise of many other people who suffer from chronic longterm illness .It does get me down but it could be worse maybe ,I have no pain just a few neurological deficits luckily still walking and communicating ok,brain tumour secondary found.I know this can change but my oncology team are helping me get through especially my lung care team nurses and local macmillan centre.So many other people with chronic conditions don't get this level of support. I am thankful to have this support .It is no ones fault I have stage 4 cancer ,it is what it is in the end and I get that now ,hopefully there is an idea to to treat any new cancer that pops up ,without getting me too sick whilst doing so .This is my take anyway ,maybe it takes a while to get there .We are all different .Diane

[JanetteR57]

don't think anything takes away the shock factor irrespective of when it happens. However I am heartened by recent studies/trials now showing many more patients in sufficient numbers surviving years for trials to be meaningful for the new treatments/treatment combinations. I've just returned from a major European cancer conference (24000 delegates over the 4.5 days) where I attended the LC sessions. Even from a few years ago, there is much more known and going on worldwide to treat this condition and more treatments in the pipeline awaiting studies outcomes. I came away with hope and awe for the scientists developing these new therapies and those analysing the samples but most of all for the patients and their families who now are represented by much larger samples on the graphs/charts than historically. Thanks and respect to all those who participate in the trials and research studies to help determine the most effective ways of treating this in future. We all need to hang on in there - immunotherapy in particularly looking promising for many and other combinations being explored in all treatment modes…. good luck all.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello SJR43,

I am sorry to hear that your dad has adenocarcinoma, the previous replies offer some excellent advice and have shared some very positive experiences. When you hear pallitive care it often summuns up visions of end of life care, when in fact this type of care is focused on providing relief from the symptoms and stresses of a serious illness. The goal is to improve the quality of life for both your dad and the rest of the family. It is not all doom and gloom, the team often includes dieticans which may help with your dads loss of appitete and physiotherapists which will help get him mobile again.

If you would like to speak with someone please give a us a call on our nurse led helpline freephone 088 358 7200

Kind regards

Roy Castle Helpline