any supporters in Bristol ?

[TraClo]

I was wondering whether there is any one using this site who are on the targeted therapy Afatinib (Giotrif) in the Bristol area- or are supporter or partner of any one on this drug or any other therapy for lung or other terminal cancer? it would be good to link up ? x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear TraClo

Welcome to the forum which can be a great source of encouragement and support.

You may have sourced information already but I have placed a link to copy and paste below on Afatinib (Giotrif)

cancerresearchuk.org/about-...

If you are interested the nearest lung cancer support group to Bristol is in Newport which I have placed below:

LOCATION

Newport Lung Cancer & Mesothelioma Support Group

GROUP LEADER

Sam Williams

Carol Davies

GROUP VENUE

The Congress Theatre, Cwmbran Town Centre, NP44 1PL

TEL NO.

01633 656149 - Sam

01873 732860 - Carol

DATE

1st Wednesday of the month

TIME

11am - 1pm

We have a free nurse led telephone helpline if you wish to discuss anything on 0800 358 7200

All the best

The Roy Castle Support Team

[tdes69]

Hi! Sorry but I could not be further away in Aberdeen, my name is tom and was diagnosed stage4 adenocarcinoma sept 2014 and was given the dreaded 12/12 prognosis..yet here I am still and it's all because of Afatinib. It was my first line treatment and have moved from dosage 40mg-30mg-20mg with no loss of efficacy due to the side effects have been on the 20 mg 18+ months...I say all this in case you want to communicate with someone who is going thru the same thing as you.. my nearest Roy castle organisation is Dundee some 50 miles away.

Anyway if you want to communicate feel free!

[tdes69 in reply to tdes69]

Apologies again..Should have said same thing as your husband!

[LKMS in reply to tdes69]

Great to hear that?How bad were the side effects that u had to reduce dosage from 40,30,to now 20 mg per day ?what next if Afatinib becomrd ineffective one day?Has the oncologist said anything?Sorry to ask so many questions!!

[tdes69 in reply to LKMS]

Hi LKMS

No problems re questions, step one is finding the meds and dosage that works for you. So I was getting the 'acne' type rash the terrible diarrhoea, loss of hair on face and body and that resulted in terrible fatigue that would come and go...but the scans were showing tumour reduction and coughing stopped so they knew it was working but just to get the right dosage..they did symptoms apart from diarrhoea which is annoying .and that's where I still am.

Re what happens next? Well at some point the cancer will become resistant to afatinib but in my case tagrisso is probably going to be the most effective next stage. And the oncologist only confirmed this after I naturally asked what happens next. All I can say is Try not to look ahead too much because things are changing and your body is now changing so what ifs are simply guesses! But it is nice to know what's next and if that calms you a little great!

Good luck

And take care of yourself

Tom

[LKMS in reply to tdes69]

Very pleased with your prompt and detailed reply together with words of encouragement.Is your type of mutations of EGFR ?I was told that Afatinib deals with EGFR very effectively until it transforms to other types such as T790M.I am not too sure if what I learned is rt.Anyway thx indeed for your kind reply.

[tdes69 in reply to LKMS]

I'm Exon 19 deletion and your research is correct that if/when afatinib stops working and 'transforms' to T790M that tagrisso can be effective for a period in 70% of cases. I did a lot of research on diagnosis too! but try to enjoy what's working while it's working and not think too far ahead. That's the only way I have kept positive this long!🌞

[TraClo]

Hi Tom thank you and I am sure my husband in particular would like to communicate so I offer his email [e-mail] as he doesn't subscribe to these sites so please feel free to make contact. He's 4 weeks in so far and it's going well. I am so glad it's going well for you. Kind regards Tracey and Daryl

[tdes69]

Hi Tracy/Daryl

I was looking through some of my answers and just wanted to check on Daryl. How’s he been getting on?

Tom

[TraClo in reply to tdes69]

how are you Tom ? Daryl is well x

[TraClo]

Hi Tom Daryl's doing well -we are off now in our campervan in Europe and he's still on the giotrif but last scan may have showed some signs of growth but ok to keep on it. Next scan is December - Daryl will email you - how are you ? Our blog is daryljdugdale.tumblr.com/ great to hear from you xxx