Has anyone had any experience of Afatinib?

In order to support a submission to the Scottish medicines consortium (SMC) for the availability of Afatinib (Gilotrif) which is a targeted (biological) therapy it would be helpful to hear from anyone that may have experience of it either through your Consultant or as part of a clinical trial

[thatboy]

Hi Beth . I haven't been looking at this site for a while as have been in the midst of 6 cycles of gem/carbo chemo - having had 4 cycles in autumn 2011 . I finished a month ago and still fairly wobbly ! I was stage 4 at diagnosis (June 2011 - squamous NSCLC) . And I guess I am pretty lucky to still be here . I started my treatment in North Staffs where my home is , but moved it to Glasgow after my first chemo regime as my girlfriend lives there . I tried Afatinib as part of a Clinical Trial in January of last year . Was on it for two months until the scan showed it was not doing me any good at all . I then had a brief spell of radiotherapy targeted at the lymph node tumours around my neck before going back to work for a couple of months . Then resumed chemo in August , and as I have said that has just finished . The most recent treatment has shown some shrinkage (particularly of the primary tumour in my left lung) and no tumour growth elsewhere . So I am now having a treatment holiday . I found the side effects from the Afatinib treatment fairly unpleasant . Though perhaps I might speak differently if it had done some good ! My skin was a mess , as we're my bowel movements . Though my general wellbeing was unaffected . My Oncologists now tell me that I have gone beyond the realms for which they have data and there are no further protocols for my treatment ! Do you have any ideas ? I hope my story is of some use to you . The last oncologist that I saw said I must have a "very unusual" cancer , in that it was behaving in quite unpredictable ways . I suppose this is borne out by the fact that it has been responsive to gem/carbo twice (the first time extremely responsive - all the secondaries practically vanished for a while) . Yet as I understand it chemotherapy has a pretty poor record with squamous NSCLC , and for the same chemo to work twice is uncommon . Thanks for all the work on this site . Keep up the good work . Paul . X

[Hidden in reply to thatboy]

Hi thatboy, Thank you so much for your reply.

We have relatively little knowledge of public experience of Afatanib, so your story is extremely helpful to us, and therefore other patients. I have sent a submission to the SMC for Afatanib on behalf of our patient group, but it is yet to be decided.

Are you familiar with any of our publications? We are always looking for people for our reader panel when we are updating our materials. If you have not seen them and would like to, I can send you them. We also produce a Biannual magazine, 'Inspire' for which we are always looking for real life stories, and input from people affected by lung cancer.

The Information and Support Office is in Glasgow, so you are welcome to drop in, if you wish to do so.

There is a great Lung Cancer support group at the Victoria if that is something you might be interested in?

Thank you so much for contacting me, and please keep in touch.

Kind Regards,

Beth.

[thatboy in reply to Hidden]

Many thanks Beth for your prompt reply . I am fortunate to be well acquainted with Clinics B and P at The Victoria Infirmary and of course with the wonderful Jackie Byers. I would be very interested in joining your reader panel - and possibly , nearer the time , contributing to your Biannual magazine . For what it's worth I am an actor and have worked extensively in Theatre , Radio, and Television . I managed to do a stage play in Manchester last summer -with some serious help from the medical team at The Victoria . More stage work this year might be a bit ambitious . I need to see how well I recover from the last five months of Chemo. But I certainly haven't (and neither has my agent),given up hope of doing a bit more T.V. or radio work . Watch this space , as they say ! All the best .

Paul .

[Hidden in reply to thatboy]

Hi thatboy,

You are lucky to have Jackie as your nurse, she is fabulous.

It would be great to have your input to our literature, and I can send you some back copies of Inspire, aswell as the current edition, if you are interested in looking at them.

Well done for doing your play last year and I look forward to hear about your future projects. Give yourself time to bounce back from the chemo, but certainly stay on the lookout for good scripts.

I had aspirations for acting and did drama at college, but then I decided to become a nurse!

Best wishes,

Beth