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Balancing quality of life with length of life

Cockburn
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I was diagnosed 6 months ago and given 6 -12 months. However if i was prepared to follow the regime of a trial my life expectancy could increase to 30 months or more, However the drugs used are not available on the NHS but i was offered the services of the NHS to administer the drugs if i was prepared to pay for the drugs. The cost of the drugs is mind blowing and unless you are super rich or have a supportive insurer then it is a no go for most people. Fortunately I have a supportive insurer. The treatment is "for life" and has to be administered 2 weeks in every 3 so no holidays from the treatment.

The treatment is causing significant side effects most notably neuropathy, lack of appetite, fatigue and worst of all loss of taste. The treatment though is working as the 2 scans since the diagnosis show no further spread or tumour enlargement. 

Now the dilemma. To stop the treatment when "hopefully" the side effects will disappear or at least diminish. In this case consider alternate holistic remedies. The appeal of this route is to get a life back. Or carry on the treatment and try to live with the side effects.  This will enable me to see some family milestones. If i decide on the latter what can be done to reduce the impact of the side effects. Whilst cancer care team and supportive network have been outstanding nobody has found a solution to the side effects. 

I am new to this forum and would appreciate and suggestions.

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    Hi cockburn

    It may be worth posting this in "ask the nurses" section. Including which cancer you have and the name of the drug you are being treated with. They are here Monday to Friday.

    Loss of taste usually leads to loss of appetite I had this when getting radiotherapy to my jaw. There are appetite stimulants available your doctor can advise but sadly not for taste. 

    It is hard to pinpoint whether the fatigue is due to the cancer or the medicine. So you may still suffer from it even if you stop the therapy. I deal with fatigue by getting as much excercise as I can do but sometimes if I do too much Im wiped out the following day. I also eat a healthy diet which is difficult if you have poor appetite. Neuropathy is a common side effect of many cancer treatments. There are treatments available which come with their own side effects.

    Stopping treatment is a difficult choice to make for all of us. Only you can decide. Wishing you the best outcome whatever your decision.

    Ed

  • Offline in reply to Farmer_Ed

    Hi Cockburn.  Sorry to hear about your diagnosis.  Like Ed says It is your choice, as difficult as it is.  How long have you been on this trial because sometimes the side effects can lesson over time.  I have incurable cancer and treatment is hard but I am on the sixth cycle now and it does seem to be getting better over time.  Someone on another forum was given 6 months and she was on a trial as this was the only option for her.  Eight years later she is still here.  A good quality of life is very important.  I really wish you well and I am sure that your decision will be the right one for you.

    Lee x

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    • I was. Diagnose with oesophagus cancer. 1 month  stage 4 not operable chemo not offered because of stage 3,CKD but having seen the effects of certain treatments on friends I elected to choose quality of life over quantity of life , After all the most important thing is a peaceful pain free death 
  • Offline in reply to MarkJoanne

    Thank you for responding. May I wish you well. 

  • Offline in reply to leelaloo

    Many thanks your reply. I am 6 months in and latest scan has shown new growth which they want to tackle with radiotherapy.. So may give this a go and then make a call after that. Good luck with your treatment. I think it is fair to say most cancers are ‘incurable’ and we must find a way that allows us to live with it. 

  • Offline in reply to Farmer_Ed

    Thank you Ed for your constructive, helpful reply. I will take up your advice re ‘ask the nurses’. The support services I am receiving through the hospital and the Cove Macmillan centre here are really quite outstanding. 

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