Just so sad

[Jill83]

My dad has stage 4 lung cancer. His first line treatment did nothing and was stopped as his kidneys were damaged by it. We have been on a year wait and watch. Well today it’s grown by 10%. He’s been offered another treatment but he has opted to go on an immunotherapy clinical trial. I hate this disease. How can I love each day watching this disease destroy our family. Not really any point to this just feeling so sad x

[Hidden]

I also have stage 4 cancer with no treatment options just a bit of gritty determination to stay around for my family as long as I can .I feel sad too ,one that I have it and two that my lovely loyal husband will be alone when I am gone it breaks my heart .Also my daughter and son would have lost there mother whilst only in their 20's.Cancer is rubbish and no ones fault the doctors do their best but for some of us there is no cure .It heart breaking depressing stuff ,just hope for a dignified end and that my husband who I love does not have to become a carer for me, which I would hate .I hold your hand in the sadness you feel because I feel it too .Crying doesn't help much but allows a little emotion out so that we can soldier on a bit longer .

[Jill83 in reply to Hidden]

I am so sorry your in the same boat as my dad. He’s so positive which helps us but I know when he’s alone it must occupy his mind. I think he thinks this trial will work a miricle and I don’t have the heart to tell him it probably won’t.

I hate the disease so much. It kills a bit of us too. I’ll never be the same again xx

[JanetteR57 in reply to Jill83]

Jill, sorry to learn about your dad but as he's hopeful, it's worth sharing his hope. In 2013, I met a wonderful cancer nurse specialist, Lyn Barrington who had been told she had less than 6 months to live with stage 4 lung cancer. She took part in various trials including Arissa and survived 4 years 4 months after being told she'd die at 48. Since then, I have met and read emails on the page she set up on Facebook (I am the face of lung cancer) now managed by her daughter who she managed to see married in the time she had left, of many other Stage iv patients who are still around due to one clinical trial or another. In the 6 years since my own diagnosis, many more treatments have come along as well as much more research worldwide and greater understanding of the conditions to help more treatments be developed so many are living with the 'stage iv' diagnosis over their heads but trying to make the most of life. If your believe and read everything you read on the internet, it would frighten you and many of the statistics are out of date so it's important of your dad and family to understand his own situation and work with the clinicians to find out what options there are for him. Immunotherapy is having some really good responses for some lung cancer patients and in the meantime, more targeted therapies are in development. For many, the current inhibitors/treatments are 'managing' the condition almost as a chronic/long term condition so I'd encourage you all to hang on in there…. sad as it is, you need to create and preserve some positive memories for him and you in this time…. good luck.

[Jill83 in reply to JanetteR57]

Thank you. This is positive to read. I will check that face book page out as well x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Jill83

Sorry to hear about your Dad, but it is encouraging to read the replies that you have had, especially from JanetteR57. There have been quite a few stories on the forum very similar, having an extended period of life (either on trials or immunotherapy) despite the odds given. Thankfully they are making improvements in the treatment options, which is thanks to those brave people participating in the clinical trials, of which I hope your Dad benefits from.

If you wish to discuss anything you can call us on our free nurse led helpline number on 0800 358 7200

Kind regards and thinking of you all

The Roy Castle Support Team