Finally a diagnosis

[Loki19]

Mum has lung cancer absolutely devastated but keeping positive. It’s stage IV as it’s spread to her spine so unable to be cured. Initially told mum would need chemo, then radiotherapy on her spine but had an oncology appointment straight afterwards and they decided as the cancer was EGFR+ they are treating with tablets and mum has to go in for tests every 2 weeks initially to see how effective they are. Back in tomorrow for a blood test and if ok will pick the tablets up and begin them straightaway.

[Daisy_Chain_12345]

Hi

I’m so sorry that your mum has this awful disease - I totally know how you’re feeling - the devastation mixed with determined positivity all feels so surreal to me as I can’t believe it’s actually happening and real. My mum has been diagnosed the same. She started tablets last week so we’re crossing our fingers that they work snd that she has no side effects. Sending lots of luck to your mum & hope the tablets are great for her x

[Loki19 in reply to Daisy_Chain_12345]

We are keeping our fingers crossed, let’s hope they work for both of them xx

[Denzie Moderator Volunteer]

At stage four all treatment is palliative no matter where the metastasis. There is a member of my Living With Cancer Support Group whose stage 4 cancer was found 13 years ago. There is no way to predict how king anyone will survive. The new EGFR treatments are changing outcomes for the better.

[Loki19 in reply to Denzie]

Fortunately I’d talked to plenty of people so it wasn’t a surprise as i knew if she had lung cancer it would be stage 4. My concern was that it wasn’t able to be treated but as she is a candidate for targeted therapy there are options so all is not lost. The future is unpredictable but once I get my heard around to the way of thinking that all of our lives are unpredictable I’m sure the path we face will be easier

[Denzie Moderator Volunteer in reply to Denzie]

Meant to say hers was diagnosed when it when’s into her spine. She had no symptoms prior.

[Ncpoet]

Survival is the name of the game. Told in 2013 that, with stage 4, there was no cure and my days were numbered. Six years later and I am still here and no evidence of disease since 2016. There have been newer treatments since I finished mine in 2016 and I feel they will find a cure. Meanwhile our job is to keep surviving until that day comes. I believe in faith and hope.

Wishing your Mum all the best!

[Loki19]

Wow!!!!! Mum is so positive that she will be around for years yet. That’s amazing you have no evidence of disease congratulations I truly hope it stays that way for you for a long time yet. Let’s hope my mum is as fortunate x

[verolove]

Hi Loki,

I know exactly how you feel and all i can tell you is try try to stay positive. Enjoy your mom as much as you can and spend all the time you have with her now. This horrible disease is a life changing event and only with the support of your family and friends you and your mom will get through this. Best wishes xoxo

[ThePurplePlace]

Please try to think positive, there are many of us "Living" with Stage IV NSCLC. we like to think of it more as a chronic illness than a terminal one. Not currently curable, but treatable.

The Targeted Therapies (meds that treat specific mutations, like EGFR) often work very well. I sincerely hope she'll have a great response. The radiation to her spine is also common and should help with any pain.

The beginning can feel very overwhelming but once she starts to see results, she hopefully we'll start to feel better and that will be encouraging.

Best wishes

Lisa

[Loki19 in reply to ThePurplePlace]

Mum started the tablets on Wednesday morning, so far no side effects. Mum was taking a couple of paracetamols for her back morning and night but since taking the tablets she hasn’t needed a pain killer at all. Whether this is down to the Afanatib or it’s a placebo effect who knows? Hoping and praying that it’s working and we have some encouraging news soon xxx

[cpfstock]

Sounds like a targeted therapy. Do you know what it is?

[Loki19 in reply to cpfstock]

What what is? The targeted therapy is Afanatib

[anrean]

Hi Just wondering how you and your mum are doing? Please let us know! My mom had lung ca in 1991 it was removed by surgery only. She has been great until Easter when we found a breast lump that is cancer. I had breast ca twice, and I am now a NSC lung ca patient. It is absolutely amazing how far new treatments have come! Both of us are looking forward to many more years. Praying your mum has great success with the new treatments.

[Loki19 in reply to anrean]

Still early days, mum has been on the targeted therapy for just over a week now. Hospital visit today (we now have to go every other week) not sure there’s much to tell us this soon though. So far mum has had minimal side effects she feels tired but with the exception of that her back no longer has all of the aches and pains.

Sorry to hear about you and your mum, it’s such a dreadful disease but completely agree the newer treatment certainly gives hope for longer lives as when you are told you’ve got a life limiting disease it’s pretty hard to hear. Good luck x