My dad has non small cell carcinoma and has been offered biological therapy to prolong life.

[macmillanfan]

The side effects are tiredness, acne and diarrhoea all of which are swaying him into not having the treatment (he is nearly 90). Can anyone tell me what he is likely to expect if he doesn't have the treatment? What happens next?

[Hidden]

Hi there,

I am on Iressa which is a biological therapy for NSCLC. I have been on it now for 17 months. For me the side effects were really minimal and after 6 months were virtually non existent. They have to tell you of ALL the side effects that are possible BUT not everyone has them and certainly not all of them together.

I had a bit of a rash on my chin, I did have some diarrhoea about an hour after I had taken it (but at the time I was on morphine too as I had had surgery so was having to take movicol to stop me from getting constipated, that then made me have diarrhoea). My skin is a bit dry but nothing emollient in the bath doesn't cure. Like I said after 6 months the rash and diarrhoea virtually stopped. My hair is growing wavy, like typical 'chemo hair' and isn't growing as quick as usual but that seems to be the only side effect now. I can honestly say I have never felt tired.

I was only the second person in my area to take it and no there are many more all of who would swear this is a miracle drug. I was only 49 however when diagnosed but on the whole my life hasn't changed. I still go to the gym and do everything I used to do.

If he doesn't take it the cancer will progress however NSCLC is a slow growing cancer and cancer in general is slower growing in older people.

Personnaly, I feel he is very lucky to be given the chance to take it as only 10% of people test positive for the mutated gene. It is said that older people can benefit the same as younger people. You need to be armed with all the facts to make an informed decision but he has a chance here to prolong his life without changing it too much.

Hope that helps

Lyn x

[macmillanfan in reply to Hidden]

Thank you so much for replying - and so positively. I'm so delighted that, despite having cancer at such an early age, you're doing so well and it's lovely of you to bother to reply. I will tell him all this - and I've sent an email to his Macmillan nurse to ask if he was EGFR positive - they told him he had the mutated gene - I'm presuming it's the same thing.

Thanks again - and best wishes for whatever the future holds for you.

Jane x

[Hidden in reply to macmillanfan]

Hi Jane,

if he had the mutated gene he will be EGFR positive, although there are several different gene mutations in the UK we only have a drugs to treat the EGFR one. They are Iressa and Tarceva.

Let me know what he decides and hope he keeps well.

Thank you for your good wishes

Lyn x

[Georgie1]

Hi Jane,

I have also been diagnosed with NSCLC. Carcinoma. I am 55 and never smoked. I proved positive for the EGFR. Mutation and I started taking Iressa on August 6th. So it's only recently.mi have a rash on my face mainly around my mouth/chin area. And tiredness. I feel well. So if your dad as been offered this drug I think it would help. I wish your father and all your family the best of wishes. Georgie xx

[macmillanfan in reply to Georgie1]

Hi Georgie

Thank you so much for taking the time to reply. Like you, Dad has never so much as held a cigarette in all his 89 years so felt rather cheated at the time he was diagnosed. He is due to start treatment in about 3 weeks and I'm hoping to persuade him to take it. Your reply has encouraged me still further.

I wish you the very best of luck for whatever the future holds.

Jane xx

[nancyjane]

hi jane

my nana is 87, has never smoked in her life and has nsclc which is stage 4.and is also in her lymph nodes, she to is taking iressa to hopefully prolong her life. without treatment we was given 6months as a prognosis.

we was worried about how she would cope with chemo because of her age and other health issues.

she has been taking it for 6 weeks now and so far is doing well.

side effects have been a very itchy scalp and back. so far no sickness or diarrhoea.

she has days when she is tired but on the whole has been ok.

the positive stories i have read of people taking this drug have given us and nana the hope we needed.

it is a scary rough road ahead but the best advice i was ever given was to take each day as it comes

and to cherish the time we have left with her.

wishing you and your dad all the very best whatever he decides to do

regards

nancy xxx

[macmillanfan in reply to nancyjane]

Dear Nancy

I am so touched by the way people have responded on this website - although it's such a terrible illness, it seems to bring out the very best in people. Thank you for your encouraging reply, I feel more and more positive about the treatment and I know that my dad does too.

Please give your nana my very best love and good wishes for her health in the future, I will think of her often.

Jane xx

[nancyjane]

hi jane

yes this site has been a godsend . nana's consultant is lovely but it helps to be in touch with people who are going through the same thing as you and your family.

all my very best wishes to you and dad,

nancy xx