Any support greatly received

Hi everyone, it's great to find a forum to share and receive support. My beloved brother has been diagnosed with stage 4 lung cancer which has spread to his liver. He has just turned 50 and had been visiting his GP since December with a persistent cough for the previous 6 months before his diagnosis when he was finally admitted to hospital for treatment of Pneumonia.

He has been treated with four sessions of chemo which in fairness he tolerated reasonably well up until his last session where he became really unwell and required admission for rehydration. However since this time his mood has dropped significantly, he is acknowledging how his life has changed in such a short period of time and is finding it extremely difficult to maintain any hope that his quality of life will improve to any degree.

The worse symptom for him at the moment is his persistent cough which is often but not always triggered when he eats. Subsequently he is now reluctant to go out to eat for fear of this. He has been prescribed Oramorph which he reports is not helping. I wondered if anyone has experience something similar but has found something that successfully worked to significantly reduce this??

On a positive note he has been informed that his tumours have shrunk following his chemo. He is due to have radiotherapy on his brain in the next fortnight. I would be grateful to know others experience of the same to pass onto him.

7 Replies

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  • Hi Jimbo, I'm sorry to hear about your brother's diagnosis and unfortunately I don't have any medical advice I can give you. If your brother has been assigned a LCN then he should call her for help in relief from the cough and also speak with his consultant to see if he can find out what triggers the coughing. I am not surprised he is feeling down as it is a profoundly difficult experience he is going through. You should keep on supporting him as you're doing.

    Good Luck.

    Rab

  • I was diagnosed last December with adenocarcinoma and then checked for mutations and an ALK mutation found. It's worth checking if he has been checked for mutations as this can affect treatment. I was 49 years old when I was diagnosed and had had a cough since the previous December. I too was at stage 4 I had radiotherapy to my eye and also had tumours in my liver and bones. The chemotherapy has so far stopped the progression in my bones, reduced the size of tumours in my liver and lung. Some have even disappeared which is great news. Having finished 12 weeks of initial chemotherapy I am now on a 3 weekly maintenance chemotherapy programme of permatrexate and will be on this for as long as I can tolerate it or as long as it knocks the tumours back.

    Best wishes to your brother and family xx

  • My partner has just reminded me that my cough went when at the start of my treatment I had a pleurodesis operation to my lung. Two litres of fluid were removed from my lung and the lung talc to the chest wall. After this my coughing totally changed and then they started radiotherapy to my eye followed by chemotherapy treatment. Hope this is useful

  • Often its the tumours that cause coughing but it doesn't sound like it in your brothers case. I was prescribed codeine linctus as codeine is a cough suppressant. It works for me. I am taking codeine for pain relief now and find that stops my cough.I cant think oramorph would be any use for coughing as its just really for break through pain and doesn't last long anyway. ~The other thing that helped was Fishermans Friends in the original flavour. I have heard of people having the cough because of gastric problems as well.His doctor should realise how important it is for him to have quality of life....if you don't then there doesn't seem any point in going on. I have not had radiotherapy to my brain but I hope it all goes ok for him. He needs to insist that they get his cough under control but give the codeine a try, only available. Also try and give him things to look forward to.Best wishes.Julie x

  • Great that the chemo shrank the tumours. My husband has stage 4 adenocna with pleural effusion. His cough kept him awake through the night initially. The medics say that the pleural effusion makes him cough as well as the tumour. Additionally we think his cough is triggered by physical exertion, swallowing pills, and stress/anxiety. Like Jujuju, he uses Codeine Linctus (5ml) at night, but only after he's cleared as much congestion as possible, otherwise he gets clogged up. He also sleeps half-sitting up propped up on pillows and a bed wedge. During the day he used to get through packets of Jakemans (preferred cherry flavour) - I have to admit, he had so many he can't stand them any more, but they did take us from diagnosis to cycle 2 of chemo. Drs also said that oromorph can act as a cough suppressant, but it didn't have that effect for us. It was quite constipating so he has a different breakthrough pain relief now and is also on long acting morphine. My husband went out by himself for the first time in 2 months on Friday to get his hair cut, his confidence and energy had been low through chemo side effects and hospital admissions. We hope that we can build on that and gradually get some quality of life back. Scan for us tomorrow so hoping we also see some positive impact of chemo. I wish you all the best in supporting your brother, it's a tough road but there are good people on it.

  • yep had that bad cough use the letus serup and a good couhing fit later had a plian black tea hot found it settled the itch in the troat so i could sleep and on the bad nights and you get them sleep in the chair it worked for me and still is and good luck we all need it

  • Jimbo

    Sorry to hear your brother's news. Diagnosis and treatment can be difficult both emotionally and physically. Think there are some good suggestions above, everyone reacts differently to chemo but for some people the tiredness and side effects can be really devastating.

    Your brother should have a Lung Cancer Nurse specialist. If his pain medication is not working, or he is struggling with his cough encourage him to talk to the Nurse. There are many different medications that can reduce side effects and it is worth ensuring that his medicines get reviewed as he should not have to tolerate daily pain.

    It sounds like you are being a good support, listening to his concerns and trying to find support for him. It can be difficult watching a sibling face something like this, it is not an easy road for you either. It is positive that his tumours have shrunk and radiation is another treatment option.

    If you need information or sign posting to local support groups or other services that might be of use do contact us on our free phone helpline 0333 323 7200 option 2 or by email to info@roycastle.org

    best wishes

    Lorraine

    on behalf of the Information & Support team

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