Newly diagnosed

My sister has been diagnosed with non small cell carcinoma, Adenocarcinoma, T2a/T3N2M0. She is to have chemotherapy ( Etoposide and Cisplatin ) and radiotherapy 5 days a week, for 6.5 weeks, as an operation to remove is too dangerous because of the cancer also being in her lymph glands in the centre of her chest. She will find out tomorrow when she goes for her marker dot etc when her treatment will start. She is doing ok at the moment, but is obviously worried what she will feel like during this treatment. Has anyone out there with this diagnosis and treatment able to tell me what to expect and how to help her and How successful it is.

[Sarah-Helen]

I didn't have radiation but had vinorelbine and cisplatin chemo, 4 cycles following surgery. It was pretty tough but very doable!! I was advised to keep a diary of all my side effects as they did in fact happen on the same time scale for every cycle and that way I was prepared for them. Do do do take anti sickness meds, don't wait for the sickness to start! Lots of water, I found that I struggled to drink water and so I had it in a bottle and kept it by my side all the time and took very small sips all day, that way I tolerated it and my stomach didn't knee jerk and say I don't want you and throw it back up. I ate anything I fancied when I fancied it, I didn't worry about the healthy side, I just wanted to get the calories in. Constipation and very loose stools were also an issue, fybogel helped as did prune juice. Gosh this all so sounds not nice, but I did get through it, like so many others. I learnt to listen to my body, rest when I needed to and did stuff when I felt well. My taste buds were ok during treatment for me but I have heard that some people suffer from it, apparently using plastic cutlery helps. I wish your sister all the love in the world.

[Hidden in reply to Sarah-Helen]

Thank you very much for your reply, I think keeping a diary is a good idea because you do forget how you were feeling on different days. Unfortunately I don't think she does drink enough fluid on a good day and I expect that to be an issue with her. I bought some ice cube bags to put juice into and freeze. I hope she enjoys a fruity taste when she starts treatment. They have told her that she may have swallowing food problems and they would fit her a feeding tube in that case. She wasn't very happy with that or the losing her hair either. She planned to just stay indoors and hide. I think this will definately be an issue with her, I bought her a scarf and myself one too, and told her that if she has to wear the scarf I will wear mine also, so people can look at us both. Thank you again for your reply

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello I am sorry to hear of your sisters recent diagnosis this can be a very confusing and worrying time for the family there is lots of information available on this forum and I am sure you will get a lot of advice and benefit from the experience of other members which can be a great support hearing their first hand experiences.

I am not sure if you have met your lung cancer nurse specialist yet? He or she should be able to talk to you about what is going on just now and make some suggestions on how best to cope. There may also be a local lung cancer support group in your area.

If you wish to speak with someone please give us a call on our nurse led helpline, freephone 0800 358 7200 we also have information booklets on lung cancer, chemotherapy and radiotherapy which may be of interest to you these can be ordered via our website or you can give us a call and we would be happy to post them on to you

Kind regards

Roy Castle Helpline

[Sharpies]

Hi.. I just wanted to share my experience as I know how scary and daunting this 'journey' is. My mum was diagnosed in September with the same non small cell adenocarcinoma T2a/N2/M0... Because the gland in the middle of the chest was affected, she too couldn't have surgery and also had chemoradiation.. She had radiotherapy mon-fri for 6 weeks and 3 cycles of vinulrelbin/carbaplatin (her kidney function was a bit too low for cisplatin) She tolerated the treatment extremely well with very little side effects.

A few things worth noting - due to location of the radiotherapy treatment, she got bad heartburn/indigestion - this cleared up as soon as she took some tablets as prescribed by the consultant

On the 4th day after having carbaplatin, my mum felt 'pumped' as if she was on steroids and her body ached. She found a warm bath, hot water bottle and paracetamol helped. It was like clock work when this was going to happen and my mum kept a diary of how she felt each day so she knew what to expect for the following weeks.

She ate brilliantly throughout, lots of good food and comfort food, kept her appetite up and drank plenty of fluids - this helped a lot.

I did her a 'pamper' bag of non toxic products. A soft nail buffer and nail cream helped keep her nails in check as some chemo treatments can make nails brittle and lift. Also, sudocrem to apply to her chest as it became a little dry but not too sore as I thought it would. She avoided hair products and used mild shampoo - she didn't have any hair loss.

Other than day 4 of carbaplatin where she felt weepy and emotional, my mum sailed through the treatment and it wasn't half as bad as what we were expecting.

Where we are now - my mum finished her treatment at the end of Dec, she had a CT scan in Feb which showed a dramatic response to the treatment. She had a PET scan on Wednesday and we've just received a call from the surgeon to say the PET scan results are fine and he's happy to proceed with surgery tomorrow!

It's a long slog, I know, it's the hardest roller coaster of emotions you will have to deal with. But this line of treatment has now allowed for the once inoperable cancer to become operable.

Best wishes to you and your sister - keep on doing what you're doing, support is EVERYTHING.

[2017ELAINEH]

Hi I've been diagnosed with the same and had my first course of chemo on Monday 20/3/17 can't operate as my tumour too close to my windpipe I have tablet chemo next week rest week following then chemo/ radiotherapy for 4 weeks followed by final 3 weeks chemo would also appreciate others experience