The Roy Castle Lung Cancer Foundation
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Mom diagnosed stage 4 Undifferentiated carcinoma. Mets through lymph and bones and in spine

I am unfamiliar with lung cancer and I need some help. understanding treatment and the oncologist answer to her that she may live a year possibly two with emergency treatment.

Upon diagnosis, because tumors in spine risking paralysis, she was sent to er radiation to be followed by chemo. She will also be given exgeva. And she's on steroids . Next would be chemo though she has already lost 20 pounds and is so fragile and thin.

So many questions. 1.Does anyone have stories of hope ,

alive far past prognosid life span given by doctors.2. Did anything as diet or supplements make pain and treatment more manageable?

I wish you all joy and healing,

Erica

PS my bio on health unlocked is in regards to my 64 year old dad with advanced prostate cancer. Yes my parents were separated since I was five but got cancer simultaneously, and I'm petrified.

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Hi Erica

sorry to read your mum's worrying news. there are many people on this site and others who have lived beyond their 'suggested' prognosis especially as new treatments have been developed in the last few years. The advocate who encouraged my involvement who was a clinical nurse specialist given '6 months' with stage iv lc but lived 4 years 4 months after prognosis using different 'targetted' agents for the particular mutations in her tumour. Everyone is different and responds differently and of course, it depends on patient's health situation before the diagnosis. Many people are unfamiliar with the progress made with every type of treatment for lung cancer in recent years and a lot of information on the general internet is out of date and scary.

If you're unfamiliar with the condition and treatments, have a look at the 'resources' section of Roy Castle Lung Cancer Foundation website with clear explanations about all treatment types, living with lung cancer, travel and other helpful articles.

steroids may help her regain some weight but eating is important (although can often be a struggle) and treatment can affect taste which means appetite is also lost.

Ask her nurse and clinicians your questions. it may help to write them down. good luck and hoping many people respond to your question to give you hope. best wishes.

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Ty so much . I did need to hear that. I am wondering how one tests for genetic mutations for more targeted therapies. You are a blessing.

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It is the hospitals who do the relevant tests as it affects the treatments if there are certain mutations such as EGFR, ALK, RoS1 and PDL1 so you/your family don't need to do anything. These are relatively recent developments in treatments (last few years) and as more drugs are developed, different markers/receptors/mutations are being selected for clinical trials to expand the portfolio of treatments. Good luck to you and your family.

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Ty so much. God I was just trying to study pladvsnced prostate cancer for a year. Now my research begins again. I was wondering if it applies only to small cell lung cancer because that's what I read. I'm wondering if it can be tested with the diagnosis of Undifferentiated carcinoma. The pamphlet on here implied it's only relevant to certain types of cancer. Nevertheless, I wish you healing and love and light, and I know I'm just a newby trying to understand but if you need an ear I'm here and if not I'm sending a very big hug xoxo

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No, such testing is done in NSCLC not just SCLC (less common). There is a major UK trial (Lung matrix/tracer x) where patients tumours are screened for wider mutational picture (EGFR/ALK testing done routinely) and if they fit the criteria are put onto different regimes if certain areas fit. In the UK, clinicians are only allowed to diagnose LC Not Otherwise Specified (NOS) after many tests and have to report this. The aim is for 85% of lung cancer patients to have a differentiated diagnosis- unsure what it is in the US but UK isn't the most advanced country for lung cancer outcomes.

I'd try not to worry about the science/mutations etc as you'll have more than enough to do to be a moral support for your mum. Probably better to read the information about the treatment types as some are done in hospital, some at home, some oral, some involve combination of chemo/radiotherapy and/or surgery. Just now I'd take time at the moment to write down questions you have and either speak to a lung nurse/helpline or ask to speak to your mum's clinician to understand her specific case. Lung cancer is very much treated as a 'personalised' condition due to its many complexities and other conditions patients have so what is given to one patient may be totally wrong for another.

We don't have to be scientific experts about the 200+ types of cancer and their mutations, what is more important is to give the medics the personal stories of how the patient (whether ourselves or loved ones) respond to any agreed treatments, their wishes, fitness and what it might mean for daily life. Only patients can provide this information to their clinicians as we're all different.

Have a read of the more general information - treatments, travelling/living with lung cancer, breathlessness so they are less worrying when your mum is told about them or has to face them. Other than that, I'd encourage you to be there for your mum and not let the condition take over every aspect of your lives if that's possible. It can be scary for the patient so if every conversation around them from friends and family is focusing on what might be driving their fears, that's not always helpful for them. That's why forums like this can help hopefully.

Thanks for the virtual hug - much appreciated. It's 7 years since my diagnosis and major surgery that removed half my left lung and a 7cm tumour but working , travelling, active so happy to share experience if it helps others in any way as I'm now heavily involved in patient advocacy and attend events where I hear about latest treatments and developments. good luck x

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Dear Erica,

I am so sorry yo hear of your mums diagnosis.I have attached the link to some publications on the RoyCastle website which may answer some of your questions available: roycastle.org/how-we-help/l...

After you have read the publications please don't hesitate to contact the nurse led Helpline if you need to talk to someone.Also, you will have been given the contact of the lung cancer nurse specialist who is part of the multidisciplinary care team involved in your mums management.She can be contacted in between scheduled hospital visits if you need to speak to someone involved in her individual care.

Kind regards,

All the team at the Roy Castle Helpline

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Ty so much for kindness. I'm in the USA can I still call?

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Hello Daddyishealing,

If you are based in the USA the Lung Cancer Alliance is a charity which is based there, they have an excellent web site which provides a wealth of information on treatments which are available in your country. They have details of local support groups and also have a HelpLine 1-800-298-2436, I think that they would be able to give you information and provide advice which is more relevant to your local area

lungcanceralliance.org/

Kind regards

Roy Castle Helpline

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