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Coffee Morning Corner

Subject

Comments from the Charity

25th March

Does ALK+ lung cancer affect  younger people more aggressively than  older people?

Some studies have shown that younger peole survive longer than older people.  In the recent Lorlatinib Crown study, there was no difference.

Appreciation for the Regional lunches

Good to hear

Concern about how some people would get to conference, eg airport tarnsfers

The charity will pay all actual costs of travel to the conference from anywhere in UK and Ireland, including airport transfers.

Concern about Oramorph being addictive.

Yes.  It is.

Suggestion that the charity prepares a passport-style document in two parts - (a) info for doctors about ALK+ LC and (b) info about the patients condition and medication

There are two separate documents on the Our Publications page on the website - (a) About ALK+ LC leaflet for doctors and (b) a proforma for patients to log their medical information.

Raised liver enzymes

A common problem shared by many members.  Oncologist may "wait and see", pause treatment, reduce dose or switch treatment.

Breaks in treatment

In a recent survey, 38% of our members reported that they had short breaks in treatment. of which 43% resumed at a full dose, 54% restarted at a lower dose and 3% switched to another TKI. If a patient has a break for more than 6 weeks, there may be funding implications in England and there is a report about this on the Our Publications page on the website.

Personal Independence Payment (PIP)

A current and hot political potato. Currently, applied inconsistently - some members get it and others have been refused.  The Government's proposed new rules are intend to limited it to the most disabled.

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ALK Positive Lung Cancer (UK) is committed to producing reliable, accurate and up-to-date content reflecting the best available research evidence and best clinical practice. We aim to provide unbiased information free from any commercial conflicts of interest.

ALK Positive Lung Cancer (UK) is a registered charity in England and Wales ((1181171) and Scotland (SC053692).  The registered office is at 1 Ethley Drive, Raglan, Monmouthshire, NP15 2FD.

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