The Roy Castle Lung Cancer Foundation
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Big setback

Never smoked but got widespread Stage iv lung cancer. I was doing well for 6 months with a targeted drug (crizotinib for ALK-positive mutation) but about 3 weeks ago began feeling very ill again, tired, not wanting to do anything, sickish, food/drinks tasting horrible etc. Any help on what I might do? It was time for 3-monthly scans so I'm having those. I wondered if it means I've now got resistance to the drug,

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I think that's what it sounds like. But there are several more targeted drugs they can try. My 18 year old daughter was diagnosed May 2016. She had 4 rounds of pemetrexed and cisplatin followed by maintenance pemetrexed for about 10 months. Her oncologist told us there were subtle signs in her CT that the pemetrexed was losing its effectiveness. She had a planned chemo break to allow her to go to Ayia Napa on her first girls holiday- but two days before departure she ended up in the Northern General with a collapsed right lung which was her original presentation last year due to pleural effusion. So she missed her holiday😡😡.

She is now on crizotinib and coming up for 4 weeks on that. She has had mild symptoms but nothing like the pemetrexed .

There is a Facebook support group for Alk positive nsclc. I really recommend it patients world wide sharing knowledge and symptoms .

Keep fighting

Aileen

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Many thanks Aileen. Most sorry your daughter has got all this to cope with at 18. Makes the rest of us see how well off we are.

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Thank you. X

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Hi

Look at this sight will give you loads of support and tips.

ALK-i.e.s.worldwide.

It's a Facebook group

Best wishes Aileen x

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I'm on afatinib for mutation and can regularly feel tired and have the taste issue. I've been on the drug for 18months now and it's continued to work despite the change in side effects. My experience is that they may need to juggle with the doesage to find the right balance of effectiveness and quality of life. I've been on 40mg to 20mg back up to 30mg and now on 20mg/30mg on alternate days.

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Thanks Adam sounds worth a try.

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Dear MaryGray

Sorry to hear about your current symptoms, and as the fellow bloggers had advised the support forum network of ALK Positive is of use on: facebook.com/groups/alkiesww

Cancer research UK have provided some tips for those who have alterations in their taste buds: cancerresearchuk.org

Choose foods that have strong flavours, such as herbs, spices, marinades and sauces if all your food tastes the same.

Season your food with spices or herbs, such as rosemary, basil and mint.

Garnish cold meat or cheese with pickle or chutney.

Try lemon or green tea if tea or coffee taste strange.

Sharp tasting fizzy drinks such as lemonade or ginger beer are refreshing.

Some people find that cold foods taste better than hot foods.

Good luck with the scan and hopefully this will provide some answers for you.

Kind regards

The Roy Castle Support Team

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Agree with most - if it is the ALK gene there are amazing trials after crizotinib fails. My husband went to Smilow Cancer Center at Yale in New Haven and was on a trial called AP26113. It was miraculous. After 4 days, no sign of cancer. Unfortunately, it stopped working for him after 18 months, but we met people on it for years. There was a new trial which he could not get into because it was only in phase 1 and was supposed to be miraculous, but at the time only 54 people were on it. I spoke to the head of clinical trials at Pfizer who explained why they couldn't get him on it but that was over a year ago. I would research that. Opdivo works for some, but you must have the PD -L1 response and this can be tested for. So, just keep investigating because the ALK lung cancer gene is a good one to have and mostly found in non-smokers.

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