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The Roy Castle Lung Cancer Foundation
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Docetaxel & Nintedanib for Non Small Cell Lung Cancer with Mets to the bones

Feeling quite helpless today. My hubbie was diagnosed in August 2016 (then aged 58 years and always been a non-smoker) and went onto chemotherapy (carboplatin and pemetrexed) for four sessions, then went onto maintenance pemetrexed until it stopped working in March of this year. He then had five doses of immunotherapy (nivolumab) but it did not work at all. Went to see the oncologist yesterday who advised that there were new lesions in both lungs and things had taken a turn for the worse.

From next week he will go back onto chemotherapy (Docetaxel) along with a targeted therapy in tablet form called Nintedanib. By all accounts it would appear this new regime is quite brutal. Hubbie is quite positive that at least they are trying something different however it is me who is not taking all of this quite so well. I think it was a shock getting that news yesterday as we had been plodding along quite nicely until March when the maintenance chemo stopped doing its job.

Just feeling quite numb and sad today. Sorry about the rant!!

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Hi Glasgow Rangers,

I am sorry to hear that your husband treatment with Nivolumab was ineffective.It is not surprising that you are in a state of shock, hopefully he will respond to Nintedanib. If you feel you would like to talk to someone please don't hesitate to call the nurse led Helpline Freephone 0800 358 7200.

Kind regards,

All the team at the Roy Castle Helpline

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Just wondered if your husband was tested for mutations?

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Hi. I am not sure and don't think so - it has not been mentioned.

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It worth checking as if he is a non smoker, he is more likely as a non smoker to have a mutation and they usually test for ALK, EGFR and possibly others. Roy Castle have a booklet about Targeted Therapies which treat mutations so it’s worth having a look at their booklet and definitely worth asking if he has had a biopsy to test for these. I am ALK positive and if he has a mutation there maybe more options for treatment.

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Is it possible that results of mutation test changes? My dad was told that he does not have ALK, EGFR and could not start the targeted therapy. Is there a possibility that this will change and he may have mutation in the future? Thanks

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I would check with the Roy Castle Phone Helpline. I am not sure x

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Which hospital is your husband seen at? You could maybe check with his lung cancer nurse? Wishing you both all the best x

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Hi Bow-19. I called The Beatson, Glasgow and he has been tested for mutations. So that is that. Thank you for your input to this. Much appreciated.

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Don't be sorry! You've every right to be upset! So sorry you and husband got such upsetting news. Hopefully the new meds will help him. Praying for him and you, to be able to deal with what is happening now. God Bless. Donna

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It's always shocking and hard to take in especially if things have been ticking along ok. The Beatson has a good reputation and also takes part in clinical trials so his clinician should be up to speed on these. As others have said, there is a lot of information available but without experience of the treatment or what it does to some patients, it's always preferable to hear from those who've experienced the treatment for their views. You could always ask the lung nurse specialists as they see so many patients and also usually have more time to speak to patients/relatives than the oncologists/surgeons. Good luck and look after yourself too. It can be very tricky trying to remain strong for others so take time to do something for you in the midst of all this 'chaos'. best wishes x

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UPDATE

Hi all. Well my husband had his second treatment on Wednesday 18 July. The first treatment went fine, however this second lot has knocked him for six. Very tired and lethargic, his breathing seems very fast and he gets very breathless and not much of an appetite at all. I looked at his treatment book and he is getting 150mg of Docetaxel per treatment and then he takes 4 x 100mg of Nintedanib capsules each day between treatments. The dose of Docetaxel seems quite high but apparently it has to do with weight, height etc. as to what dosage you get. He also has a list of treatment dates which take us into 2019 with no break at all which is a bit scary if these side effects are anything to go on.

Does anybody have any hints and tips as to how to manage the fatigue side of things? My hubby is going to bed at around 7pm as he cannot keep his eyes open. Also, do these side effects subside over time or is this way forward?

Any help as always would be greatly appreciated.

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Sorry to hear that things have got worse for your husband. My husband has got lung cancer and I sometimes feel worse than he does about it. It’s difficult to keep strong and positive but we have to because we care about them. It’s not easy though is it.

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Thanks for that Carole. Sometimes I could just scream and run away but that won't do anybody any good!!

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